Osteogenesis Imperfecta Foundation
Live Webcast

"College and Careers"

 

October 15, 2000


Gina:     To our audience around the world on the Internet, hello and thank you for joining us for this special edition Osteogenesis Imperfecta Foundation webcast "College and Careers." From our HealthTalk Interactive studio in Seattle, Washington, I'm your host Gina Tuttle. We bring you this special edition broadcast to provide you with important information to help you make the right decisions about college and your career.

Here are some of the topics we'll be talking about during today's program: What should a student who has osteogenesis imperfecta look for in a college? What characterizes an OI-friendly college from one that is not? Which issues are relevant to students with different types of OI? Is there such a thing as an OI-compatible career? In addition to the information you will get from our experts today, many resources have been prepared for you, and these are available as handouts for you to download at any time.

Joining us by telephone is Carol DeSouza. Carol is the executive director of the Association on Higher Education and Disability. She previously worked as the ADA/504 compliance officer in the Office of Affirmative Action and as the director of Student Support Services at the University of Massachusetts in Boston. She provides in-service and disability-related training to numerous colleges and universities, and Carol received her master's in education from Harvard University's Graduate School of Education. Carol, thank you for joining us.

Carol:    Thank you. It's my pleasure to be here.

Gina:     Carol, can you tell us the kinds of choices that people with osteogenesis imperfecta are facing today in terms of finding and attending a college?

Carol:    I suppose first, many of the issues facing any student who's choosing college, regardless of whether or not they have a disability, are those that need to be considered today. Obviously, why go to college? Is it something I want to do? What are the different career paths I can take? Whether I want a two-year program, a one-year program, a four-year program, a graduate program? Whether I want to live at home, whether I want to live away from home. Those general questions, including, of course, the important ones to parents like myself of college students - how do I pay for all of that? - are questions that any student needs to ask first.

           There are probably some particulars that students with OI might need to look into after they have started to respond to those questions I've already asked. There might be some particulars about the dormitories, some particulars about personal care attendants and so on, which we can get into a little later in the program.

Gina:     And we certainly will. We've got lots of questions for you, Carol.

Carol:    That's fine.

Gina:     We're also happy to have with us Erin Dean. Erin is a second-year student at Champlain College in Vermont studying business. She has osteogenesis imperfecta, type III. Erin, thank you for joining us, too.

Erin:     Oh, it's my pleasure.

Gina:     Erin, you chose to live at home while attending college. What's that been like for you?

Erin:     I think it has its pros and its cons. For one thing, everything at home is set up for me, so I didn't have to worry about having the dorm accessible, the bathroom accessible, and the laundry and getting meals, and things like that. But on the other hand, you do miss out on a lot of the social aspects of going to school. But I like it. I think I'd rather just live here.

Gina:     Well, that sounds great, and we'll have a lot of questions for you, too. Also with us today is Dr. Evan Sisson. Evan is a graduate of the College of William and Mary in Williamsburg, Virginia and the Medical College of Virginia School of Pharmacy at Virginia Commonwealth University. He is currently the program development coordinator at the McGuire Diabetes Health Center in the Veterans Affairs Medical Center in Richmond, Virginia. Evan has osteogenesis imperfecta, type I. Evan, thank you for joining us.

Evan:     Thank you.

Gina:     Evan, we've heard Carol talk about the choices that students with osteogenesis are facing today in terms of college, but can you tell us how your college choices - including living on campus - might have prepared you for the workforce?

Evan:     Well, I think the thing that I learned is a deeper reliance on myself. And I had the advantage that I was able to live on my own, but it was very different to go out of the very comfortable home setting into a situation where I had to take care of my own laundry, and I had to take care of getting to class on time and things like that. So, it was a time for me to really test my own mettle.

Gina:     We'll be hearing a lot more from Evan and from Carol and Erin in a moment. Before we move on, I want to mention that today's program is brought to you by the Osteogenesis Imperfecta Foundation, so we truly thank them for their support. I would also like to mention that the opinions expressed in this program are solely the views of our experts and not necessarily the views of our sponsor or any outside organization. Please consult your own physician for medical advice most appropriate for you, and consult your college advisors for college advice most appropriate for you.

Now, Carol, I'd like to invite you to start by telling us what rights a student with a disability has and how things have changed, assuming they have, for people with a disability in the past five or 10 years.

Carol:    Well, sure, I'd be happy to. Actually, many of the college campuses were providing support services and accommodations for students with disabilities way back to 1973, when Section 504 of the Rehabilitation Act was enacted. With the coming of the ADA, it was a wakeup call for those colleges and universities that - up until that time - had not been, maybe, providing full accommodations for students with disabilities. At least, it gave them a chance to take a look at telecommunications and employment issues, and for many, looking at programs of study off-campus - internships and co-op education programs and programs such as graduate programs in education and nursing and so on, which might require an off-campus practicum setting.

Up until that time, most campuses had done a pretty good job in providing accommodations for the classroom, for the lecture hall, and for those discussion groups. But it was quite a challenge to make sure that those accommodations did transfer to other settings outside the immediate classroom. I think Erin mentioned a little bit about social life and the social life of a campus. And so, one has to also look at what have colleges and universities done over the last 25 or 26 years, and especially in the last 10 years since the signing of the ADA, to make sure that students with disabilities can fully participate in the college program. And that means in athletics and in the social life of the campus, not just the classroom and the library facilities, but far beyond that.

I think that the colleges and universities are in good shape at this point in time to work with students with disabilities to make sure the programs of study that are feasible for those students are, in fact, fully accessible to them as well. And what we have to be careful of is remembering that the colleges and universities are required to provide access to the programs - not to ensure the success of the students. The students have to do what any other college student needs to do in a college program, and that's work hard and study, get their study skills and their academics in order and proceed through the program of study without feeling that the program of study is in place just for those people who do not have disabilities. They shouldn't think "I'm a student with a disability, so I don't have to do this, that, and the other thing."

Well, once we get beyond that, we realize that in order to successfully complete the program, students with disabilities need to make sure that they are qualified and that they are ready to take on the program of study. And if all those things are in place, then the student needs to choose the college, choose the program, and choose the career just like anyone else, without worry that they will be denied access and participation in that program.

And so I think that we are ready for the challenges that we face with any student who's transferring to college. I know that parents out there are concerned about the student leaving home, about the transition, possibly, to a dormitory setting, about whether or not the student is going to cross state lines and go out of state and get far away from the home environment and what's been seen as the safety of that home environment, whether or not the student is going to be able to take part in the activities of that college, whether or not the student is going to be accepted socially in that college, and so on.

These are issues that every parent faces, whether they are the parent of a student with a disability or not, and I think that the students on your broadcast will realize that they are going through the same career choices, the same paths. Where do I want to go to school? Why do I want to go away? What do I want to study? What kinds of job opportunities are there when I finish? How am I going to pay for all of this? Is there help out there? And so on. And so I think that with the passing of these laws, certainly schools here in the United States have a great deal of support and a great deal of the support services and academic services to help the student get through the program of study that he or she chooses to take on.

Gina:     Carol, how can a student evaluate how accessible a college is going to be for them?

Carol:    Well, I think in this day and age, the Internet certainly has helped us all in trying to find out more about colleges and universities. In the past, we were reliant on the hard copy books that were in the library. You know, Peterson's guides and other guides to colleges and universities, flipping through, ordering college catalogs in the mail, waiting for those, and, stacking those up. Going through those and finding out about tuition charges and so on. And now colleges and universities have Web sites.

Now, while a student may be able to tell a great deal about the college, there are some that have not posted on those Web sites specific information about accessibility issues, especially architectural accessibility. We're getting better at that. In fact, some colleges and universities - for example, the University of California at Berkeley - have accessible maps of the campus right on the Web site to show students the accessible routes and so on. I would say that any college and university needs to provide the program of study in an accessible way, and that includes architectural accessibility as well.

We have some challenges still out there. In chemistry labs nationwide - I pick on chemistry, but other science labs as well. Maybe Evan can talk a little bit about his experiences with this, where we have some challenges in terms of accessibility of the microscopes and for those who are visually impaired, for example, seeing through the microscopes and so on. For those mobility impaired, those students who use a wheelchair, to be able to access all the equipment and supplies and so on.

So we still have some challenges. It's not a complete utopia out there. But the colleges and universities are in fact posting more and more information on Web sites. Other ways that the students can find out about the campus is to call the campuses and to talk with persons within the disability services office. At AHEAD, and at the AHEAD Web site, persons can post questions for us, and we will get people in touch with persons at the college and university disability service offices who can talk with the students.

In terms of accessibility, there's nothing like visiting a campus, and not visiting it during the summer months or during vacation week, but visiting a campus that is active, visiting classrooms, sitting in some classes, talking to other students with disabilities, seeing what the cafeteria is like. Erin mentioned her laundry facilities and so on. A visit can make sure that the campus is as accessible as the student needs it to be.

Evan:     I would agree with that, that one of the things that struck me when I first went to college was how big everything was. In high school, everything is in one building. Changing classes is an issue, but if you allow a little bit of time, it's not really a problem, whereas in college, the distance between the dorm and the dining hall and the distance between the dorm and your 8:00 class may be fairly significant. It really struck me when I first started doing it, especially on crutches or in a wheelchair, how far that really was.

Erin:     Especially when weather is taken into consideration, like rain or snow, it causes more problems.

Carol:    That's very true. Here in Boston we're faced with ice storms and snowstorms that really do challenge us to have the paths of travel ready for the students very early in the mornings.

Gina:     Carol, I'm wondering about whether some universities have more heart in the effort. Everybody has to make some provisions under the law, but are there certain colleges that are really eager to have this kind of student and make them welcome and make it work?

Carol:    Certainly, there are campuses, as you say, that might be more user-friendly for students with disabilities. Those are campuses that many times have served students with disabilities over the years and have tried to figure out some of those challenges that I referred to earlier, and have tried to make the program work. And that's not to say that other colleges and universities are not open to students with disabilities, but they just haven't figured out all of those challenges yet, and some of the things like transportation - getting from building to building, and moving classes - need to be incorporated into an institution.

I'm at a university in Boston that's completely accessible, and all the buildings are connected. And so we have a large number of students with disabilities in the program, and that's because of the accessibility of the campus and the Boston area. And so, it's a matter of finding out which campuses have done a good job.

Now, that's not to say that it's only the large campuses. I don't want to give the impression that only large universities are the ones that have been prepared for students with disabilities. There are some very small, private colleges that have done a wonderful job in terms of providing accessibility and being very open to serving many students with disabilities. It's a matter of finding out about the college of your choice or the colleges of your choice and then making an informed decision about which college will serve your needs the best.

Gina:     You mentioned that one of the concerns for every college student and their family is how they're going to pay for it. What kind of financial aid resources are out there?

Carol:    Well, I just put two through college. Maybe it's more pertinent for me at this stage in my life. I think that there are many sources of financial aid. Some of them need to be uncovered. They're collecting dust.

First and foremost, there's the federal aid - federal financial aid - and in the handout is a reference to the Heath Resource Center, and I can't talk enough about their work. Heath is a subgroup of the American Council on Education, and annually they put out a report called Financial Aid for Students with Disabilities, and most of what's in that document is about federal aid.

There's, of course, state money, and beyond the state monies and those vary state to state in the amounts of money, the college itself has money. And sometimes people are afraid to ask for it. My suggestion is ask for anything. The worst that can happen is they say no. But continue to try to find out what's available and what the colleges themselves are willing to do in terms of helping to support and fill where there are gaps.

Beyond that, there are certainly foundations and support from private foundations, especially geared toward students with different types of disability, and again, I think that your handouts refer to some of those. So, monies are out there. No one should count on a free ride anywhere, and one has to put together a package of funding, and that may also include a loan package. What a student needs to do is to become friendly with someone in the office of financial aid. In addition, guidance counselors in the high schools and folks who are in vocational rehabilitation (voc rehab) and other places might be helpful in identifying other sources of funding for a particular family.

Gina:     Okay. We've talked about choosing a college and how to pay for it. One of the other things is to decide why you're going to college. How does a person with OI choose a major and plan for a career?

Carol:    I'd say the same way anybody does, and that's a challenge to all of us. In the past, we would be nervous about entering a college if we didn't know exactly what department and what major we were going into. Those days are gone. There are many freshmen who do not declare a major in freshman year. They try out different courses in different departments to see where they might fit in. They come, everyone comes, of course, thinking they want to go into computer science because they've heard that's where all the jobs are, but it takes some time to filter through the different possibilities of courses.

Obviously, if a student has a particular career in mind and is really strong on that, then the student needs to make sure that the college or university gives that path to them in order to prepare them for that particular career. Many times, students start at a two-year college first and then transfer into a four-year institution if their career path takes them beyond the associate's degree. Sometimes people start in a six-month program of technology or computer technology or something and then move into sometimes a community or junior college, sometimes into a four-year institution.

So, it's a matter of asking, "What is the career I want to do? What's the path I have to take to get there, and what are all the requirements?" And be assured that you're going to have to follow the requirements and the course of study. The question is how do we do that and how best do we choose a place that's going to allow us to be there when we want to be there.

Gina:     Carol, you sound so can-do. It'd be nice if everybody had somebody advocating for them the way you do.

Carol:    Well, we try to make sure that the students with disabilities don't feel that, "Everyone else has a career path, everyone else has the opportunities, but I'm a student with a disability, and I've got something different." I'd rather go about it by saying, "Let me choose a college and let me choose a program and let me worry later about whether or not I have to educate this college about my disability. I have to be a good advocate for myself. I need to know what I need. I need to be able to explain my disability to folks, and I need to be able to say to folks, 'This is what I need, and let's see how we're going to get it provided.'" In my opinion, the disability shouldn't be first and foremost. First and foremost is, choose what you want to do, and then let's figure out how to get it.

Gina:     We have plenty of people with questions for our panel members. And please, don't forget to answer our brief survey. That's going to help us plan future programs for you.

Now, let's get a current student's perspective. Erin, how did you go about selecting your college, and what were the key things that you were looking for?

Erin:     When I started looking at colleges in my junior year of high school, I really didn't know what sort of career I wanted. I was flip-flopping between a couple of different things. But I knew I wanted to stay in New England, so I got one of those big book of colleges, and I thumbed through it. I looked at all the ones that had accessibility and stuff, for disabilities. Then I just went and I called them all, and I started collecting information.

But then I visited them, and a majority of the ones that I went to that said they were accessible really weren't all that accessible. So, I found out early that I really had to do a lot of legwork. I really had to walk the campus and then go on all the tours and things like that.

But, fortunately, I went to a college that had a lot of different career options because actually - as of only a semester ago - I used to be a graphic design major. So, I've sort of changed already. I really didn't know what I wanted to do. My suggestion would be to just choose a college that has a lot of different options for careers because you change your mind so easily. You try a class, and you may really enjoy it, and you may decide to change your major entirely.

Gina:     So, Erin, what are you looking to go into now?

Erin:     Business.

Gina:     Great. And how is it going? Have you run into any obstacles pursuing that?

Erin:     No, I haven't. I mean, I figured business would be a great career because you can do a lot of different things with it. It's not like you're pigeonholed. You don't have to just do one thing. You can go into a lot of different areas. And I haven't really come across any obstacles, but I haven't done an internship yet, so I'm figuring that it might be a little difficult finding one. But that'll come up in a year or so.

Gina:     When you talked about looking for colleges, did you find any particular support systems, or you really had to check these places out yourself?

Erin:     I really had to check them out myself, because people's definition of "accessible" is sometimes different than what accessible really is. Like, they'll think that, you know, a little four-inch step is accessible, but when you're in a wheelchair, it's not. So, you really do have to go to the campuses and really look around.

Gina:     And once you got into your college, did you find support systems?

Erin:     Yes. Well, I go to a very tiny school. Well, actually, I'm the only one in a wheelchair at school right now, so I mean, there's support, and they are very nice, and they've adapted a bathroom and everything. But I'm a minority, definitely. But, yes, there is a support system there.

Gina:     But it sounds like you have had to really advocate for yourself, again, and say, "This is what I need."

Erin:     Yes, definitely. You really have to do that or else people don't know what you need. You really have to tell them.

Gina:     And then you found them pretty willing to work with you.

Erin:     Oh, definitely. They were more than willing to help out.

Gina:     Oh, that's great. You talked, Erin, about the social issues. Can you talk a little bit more about that? Are there social programs out there? Is it difficult to participate in them?

Erin:     Well, since I live in Vermont, everybody goes skiing. And I obviously don't ski, so it is a little difficult. But they have other sorts of programs. They have, the student government, and they have the drama club, and they have a bunch of other different clubs at my college. But since I commute, it's a little harder to participate in them. That's the only drawback of commuting.

Gina:     You said that evidently the administrators were willing to help make the accommodations that you needed. How about the other students? Do you find them welcoming?

Erin:     Oh, yes. They're very welcoming. I haven't run into anyone that wasn't more than friendly. I think it's just how you react, too. If you're friendly and you're not one of those people who say, "Poor me," and think that they absolutely have to do everything for you, I think you get a little more help than you would by being more demanding.

Gina:     Well, you sound like somebody who would get along with anybody, Erin. Evan, let's ask you a couple questions. You've completed college and graduate school. Now you're probably facing all new challenges in the work world. Can you tell us about some of the issues you're facing now, maybe even as a result of your choice of college?

Evan:     Well, I think I would agree with a lot of what Carol said as far as the most important things when looking for a career is to pick something that you like, and not let the disability take center stage. Certainly, in choosing a career, I was concerned at some point what would happen if I had another fracture and had to withdraw. You know, what would happen to my income? And so, in choosing to go into pharmacy, it was a selection that was based on the idea, "Well, there are some things in the field of pharmacy that I can do from home," as far as patient education-type productions, as far as creating writing samples and things that could go on the Internet. And so there are a lot of opportunities there.

Had I the opportunity to go back and do it all over again, I might have even picked another field in health care. I might have decided to go on and become a medical doctor or a surgeon because I think that there's a lot of things other than the traditional roles in those disciplines that are available. The technology, the way it's advancing now, is to a point where you're not restricted to those very traditional roles in these disciplines that are very fulfilling.

Gina:     So, is there such a thing as an OI-compatible career?

Evan:     Well, I think that there are some OI-non-compatible careers. The obvious ones, you know, professional football or something like that.

            But beyond that, I think that people with OI just need to pick something that they like, something they enjoy, something that's very satisfying and fulfilling to them, and that's what's going to make them successful. And I think that the barriers that people face from having OI, as far as accessibility, can be overcome, especially as the technology, the Internet, computers and telecommunications continue to advance.

You're going to have fewer restrictions. For instance, today, I'm speaking to you from Phoenix, Arizona, and I live in Richmond, Virginia. You don't have to travel cross-country to do teleconferencing anymore. You can do it at home with your computer. I think that just opens up a whole world of opportunities.

Gina:     Did your choice of a college have any impact on your choice of a career?

Evan:     The advantage of going to William and Mary, for me, is that it's a liberal arts college and university. It's the second-oldest university in the country, second behind Harvard. And it was kind of interesting, because I was sort of the test case for them. They hadn't really dealt with somebody in a wheelchair necessarily before, and I think it happened maybe once or twice when maybe athletes had had a knee injury or something. But by being a very old campus, there were brick sidewalks everywhere, very uneven, chatter your teeth when you went across them in the wheelchair. And so, there were a lot of challenges to overcome.
I think since that time the campus has made some very positive changes.

As far as myself going to a liberal arts college, the advantage to me was that it allowed me to try a lot of different things and find out what I was good at doing and then select a career based on that. I think if I had come right out of high school and followed my initial inclination to go into computer science because that's where everybody says the jobs were even 10 years ago, I think I probably would have been stuck in an area that I really didn't like and wasn't really appealing to me. It was good for me to go into a university setting where I could try a lot of different things, and that worked well for me.

Gina:     So, what I'm hearing from all three of you is that you don't have to make the decision before you even get there. You can give yourself a lot of flexibility.

Evan:     That's right.

Gina:     Did you have an internship, Evan?

Evan:     Yes, I did. In going to pharmacy school, the way pharmacy school is set up, there's two years of prerequisites now. You can be a little slow at doing that; you can already have a degree, like I did, before you make that decision. But if you really know that you're going to go into pharmacy, you can do two years of prerequisites then four years of pharmacy school, with the last year being completely an internship.

Now, the advantage for me, going into health care, is that all of the hospitals are accessible. And so that was another thing that kind of dawned on me, if I should happen to have another fracture - and currently I'm doing very well and have been doing well for a while - but if I should have another fracture and have to be confined to a wheelchair, what better place to be in a wheelchair than in a hospital setting? The floors are flat. They have automatic doors. And, so, for me health care turned out to be a nice career choice.

Gina:     That sounds perfect. Would you have any advice for Erin about internships, what to look for?

Evan:     I think as far as internships, I would view it the same way as you view the college situation. Erin pointed out that what people say they have and what's really the case are often two different things. I think there's very few educational institutions that are going to be... I guess legally they can't say, "Well, we're not going to accept people with disabilities." And they all want to accommodate. But, over time, especially some of the older institutions may have had trouble renovating things, and so you really don't know until you go and visit the site.

Probably one thing to do would be to find out, have there been people with disabilities who have gone there before, to this internship? How have they done? Where did they live? How did they get to work every day? If, for instance, if you were living in New York City or Washington, D.C., maybe people travel on the metro. Well, what are the accessibility issues there? Things like that. Go through a normal day, and see how that works, and see if it works for you and fits with your lifestyle.

Gina:     Evan, you talked about being one of the first people to be in a wheelchair on your campus. Do you get tired of being the one who makes it easier for the others who follow, the one who has to explain, the one who has to sort of push for what's needed?

Evan:     It can wear you down, yes. It can wear you down. What you have to remember is that you're not in it by yourself and that there are a lot of folks around - Carol is a great example of people who are really trying to help make things better. And there are a lot of folks at the university who are doing exactly that.

 Erin made a good point that what you really have to do is not be afraid or self-conscious to say, "Hey, I need help," because so often in our society that's a sign of weakness. Well, with a disability, it's not a sign of weakness. It's a sign of a need, of a barrier that needs to be overcome. And together we can work together to overcome that barrier.

Gina:     You know, we've gotten an e-mail from somebody who wonders about being an attorney. That obviously would have a different setting than a hospital. Any thoughts on that and how they would decide whether that was right for them?

Evan:     The advantage of going to law school and becoming an attorney is that you don't necessarily have to be Perry Mason. You don't have to necessarily be trying cases in court.  There's a whole slew of opportunities, be it corporate lawyers, lawyers in ethics, things that really are challenging, make you use your mind, things that you can be really good at, and then things that if that is something that is really near and dear to your heart, you're going to excel. And so I would see that as a wonderful opportunity for somebody with OI.

Gina:     Carol, would you have any thoughts on that?

Carol:    I'd agree with Evan. Even the courthouses are getting more accessible, so we're getting there in that arena as well. I agree with Evan that the hospital settings are probably the most ready for folks. But certainly, any career path may have its challenges. As Evan said in the law arena, not every type of a lawyer is the type of lawyer we want to be.

But in choosing our internships, in choosing our course of study, in choosing which paths to take, in talking with people who are in those positions - "How did you get here? What courses did you take? What challenges did you face in coming here?" - would also help to form and formulate what kinds of career, specific career, persons want to go in. I think when we were talking earlier about internships, I don't think there's a better way to find out about what's out there. I would recommend for Erin in the business world as well, to go out there and to shadow somebody.

Go out there and get an internship; have the college work with you on placement. Disability service providers in the colleges and universities have worked for many years to make the program of study accessible, sometimes those disability service providers have to assist when the student goes out on an internship, by assisting the persons out there in the field to determine what's really needed.

There's, of course, a scare out there that, "Oh, no, here comes a person with a disability. We just can't accommodate this person in this kind of work." Well, instead of looking at it that way, again go from the more positive aspect and say, "Okay, this is the type of career this student would like to go into. What are the ways we can make this happen? How can the student work in this arena? How can the student start? How can the disability service providers offer assistance to those in the employment arena to help modify the job?" Because just as Evan was a test case and Erin might be a test case there in Vermont, the fact is that many businesses and many careers out there need to be challenged, need to figure out how to accept persons with disabilities within their own careers. And we're working on that right now.

And, again, it has to be realistic. Let's be realistic with the choice of careers. That's for any student, not just the student with the disability, but any student has to be realistic with his or her goals, his or her skills, and the path he or she wishes to take to get there. You can't be a doctor next week. You can't go in a six-month program of study to be a doctor. And you have to be realistic with what are the challenges that you might face out there.

And that's not to say that we shouldn't always test ourselves and challenge ourselves, but we should be realistic about some of the careers that we choose, that they are realistic for us given our academic skills and given our physical skills and what we can achieve when we get there, so we're not wasting our time and not spinning our wheels. And I think that it's important to have an internship, co-op education, or any type of situation like that - even shadowing - to go in and work with someone for a little while, see what they do, see how they do it. It helps the employer understand your disability as well as help you understand what the business is all about.

Gina:     Carol mentioned earlier that you also have to meet the same course requirements. You still have to do the same work while you're in college as anyone else, and Erin, I'm wondering if that's been hard for you at all? You're commuting; you're trying to get around the campus. There are obviously challenges that some of the other students don't have. Has it been difficult to keep up with the work at all?

 

Erin:     Actually, it really hasn't, but the key, at least for me, is I'm actually going just a little more than part time. I'm taking nine credits a semester. I have less of a workload, so I'm able to get it all done.

Gina:     Oh, that's great.

Erin:     Yeah. And then actually I'm only commuting three days a week.

Gina:     That sounds manageable.

Erin:     Yes, it's really manageable. They've worked with my schedule, and they've really done a good job making it so I'm not really tired, and I do get the work done, and I can do the work at a higher quality because I'm not as drained from commuting and going to classes and stuff.

Gina:     So, part of being realistic - what Carol was talking about - is being realistic about how much you take on.

Erin:     Yes. I've also been taking summer courses to make up for the ones that I haven't taken during the year.

Carol:    Some of the colleges have not only the summer opportunities that Erin is taking but also opportunities in intersession and shorter courses, sometimes support courses online, different types of supports for students who may, like Erin, choose to be somewhat less than a full-time student. That also allows them some time for socialization, travel as Erin's doing, and some other things.

But many times, especially in freshman year, students take on a part-time course load to start out with and then make up, as Erin does, at a different time of the year or in a different semester for those courses that might not allow that student to be full-time at all times in the college career. There are many students, disabled and non-disabled, who do not take a full-time course load all the way through their careers, as was the practice in the past. In the past, you'd enter school, you'd four years later graduate with the B.A. degree. Well, that doesn't happen anymore.

Evan:     Well, I would agree. I think that you have to match the workload to your physical capabilities and that one thing to remember is why you're there. You're there to learn. You're not there to try to go through some endurance test.

And I know that when I first went to college, I had a full course load - enrolled in the band and different things - and ended up basically just exhausting myself to the point that nine weeks after I started, I hung my foot on a brick that wasn't quite flat outside the dining hall and fractured my leg. And why did that happen? Mainly because I was exhausted. I didn't have the physical strength to recover from that stumble, and down I went. And so, I think that it's a great idea to match the educational workload to your physical abilities, kind of ease into it.

Gina:     In terms of meeting the requirements at whatever pace you take them, I'm wondering, Evan, about the labs. Carol mentioned some of the science labs. Did you run into any problems with getting all the courses you needed, attending them, and having it work for you?

Evan:     The labs can be difficult. Some of the microscopes, some of the balances where you have to read things are not geared for somebody that's 4 feet 10 inches. So you have to kind of be creative in how you overcome that. Again, being proactive and talking with the instructors, talking with the lab (teaching assistants) TAs and saying, "All right, these are my skills, these are my capabilities. How can we adapt this setting so that I can participate?" When you present it that way, I've never had anybody say, "Well, no, we're not going to." Folks have always adapted.

One of the things that people always bring up is what about the physical education requirement? Being at a liberal arts university, I had to take two years of physical education. The way I got round that, or not "got round" it, is that I enrolled in an adaptive P.E. program, similar to the one I had in high school. But what it turned out to be was a strengthening program with a licensed physical therapist who was one of the full-time staff that instructed the course. That turned out to be great for me because what it allowed me to do was work out a program with him where I could gradually build my strength, build my endurance.

I remember coming back to the P.E. class one day - I would swim three days a week and then two days a week I would go in and ride the exercise bike - and I remember coming in one day in the springtime and saying, "You know, I walked to class today, using my cane and not the crutches, and it was easy to do." I wasn't exhausted when I got there. And so I really saw the benefits of that. I think adapting those sorts of things to the capabilities and the skills of the student are real useful.

Carol:     So, what looked like it might be an obstacle turned out to really be an asset?

Evan:     Exactly.

Gina:     I'm wondering if that's also been true for your career in some ways, you're working in a hospital. Maybe people react to you differently. Maybe you have special insights into what some of them are dealing with.

Evan:     That's true. I do a lot of patient education, and so what that allows me to do is listen to people and listen to what their barriers and problems are. And because I have my own insights and my own barriers and things that I've tried to overcome, I think it's helped me in being a better provider for these patients.

Gina:     I've got a question for all of you. We've been talking about what you want to do and how you make it happen, and again, there's the issue of money. I'm wondering if there are additional costs for students with a disability. And maybe, Erin, you can tell me if you've found any extra costs.

Erin:     Well, I think I found a cost this semester. I went to the bookstore, and I bought my financial accounting book, which was probably about five pounds. So, I had to cut it, and I am not going to get any money back at the end of the year when I try and sell it. It's gone.

Gina:     But what a creative solution.

Evan:     That's great.

Erin:     Yeah. So, I just think probably the books and if I had to adapt a dorm or something, that would cost extra. And the adaptations to the bathroom are extra. I mean, I had them already for my high school, but it would still cost extra to do that.

Carol:    Actually, out of pocket, Erin, none of that should cost you a cent.

Erin:     Really?

Carol:    We should try to find out whether or not the colleges and universities or the voc rehabs or others can help support that because it can be a burden to students if they think that they have to adapt their rooms in a dormitory or have to make any special provisions about different things. I love your example of the book, Erin. Many publishers are trying to provide books in alternate formats and on diskette and so on, so sometimes you can get that format instead, and that can help you instead of cutting up these $80 books that I'm sure you're buying.

Erin:     Yeah, it was sort of sad cutting it.

Carol:    Yeah, I'll bet.

Gina:     Evan, did you run into any extra expenses?

Evan:     I didn't, personally. The college was very good at adapting, and they actually had some new dorms that were, I think, a year old when I first started. And so they already had the bathroom facilities and everything, though at the time I remember that they did not have the automatic doors for the outside, and of course, being big college doors for the outside, they were very heavy and had a very heavy spring on them. So, that was sometimes a challenge when you had a book bag full of heavy books, like Erin's talking about - and trying to manage that with crutches - and so it was difficult at times.

Carol:    That has been a challenge to many institutions, to get enough of the electric opening doors to meet the needs of all the students. We are getting there in terms of the main doors, but certainly there are still some challenges to doors within the campuses for students who have difficult opening them. Again, the disability service office should be contacted so that the paths of travel can in fact be mapped out and the easiest ways around that can be done.

I saw some wonderful new floor pads that the student in a wheelchair would just wheel over. This was down in a school in Florida recently. So it's almost like a pad in the cement, and you just wheel over it, and it opens the door electronically. So, there are some wonderful advances.

Evan mentioned earlier, too, the adaptive physical education. We find many times adaptive computer labs, adaptive physical education, adaptive facilities all over the campuses now, adaptive sports, wheelchair sports and so on. There are a lot of advances being made. And I think that as colleges update their facilities, certainly colleges as old as William and Mary, have a lot of work to do in buildings that I'm sure are inaccessible due to lack of elevators and other things. But as the campuses update their facilities, they, too, are coming into better compliance with all of the rules and regulations. But the electronic doors are really still a challenge to many.

Gina:     You know, you guys have different problems here. Erin, you've got type III. It's the more severe type of OI, and Evan, you have type I. And I'm wondering what kinds of issues are relevant to students with different types of osteogenesis imperfecta. And Carol, I'd like your opinion on that, too, but let's start with Erin.

Erin:     Well, I think for me the accessibility is probably a little different, and also the bathroom situation is different. Like, in the bathroom that they set up for me in school, I actually have sort of like a table to get onto, and I can't just use like the bars on the walls. So that's a little different. I had to adapt that even more, and it actually took up a stall in the bathroom, so no one else can really use it.  So, I think that that's a little different.

And I also think that opening doors is a little harder for me because I'm much smaller. But I find that when you're going in and out of buildings in a busy campus, there's always somebody going in or coming out when you're there. So I never really have a problem with that, and they're always willing to hold the door for me and stuff like that. Everybody's usually friendly.

Gina:     That's wonderful. Evan, how about you?

Evan:     Well, I think that one of the neat things about college life is that people are there to learn. They're there to learn new things. They're there to meet new people. And I was always amazed at how willing people were to accept me. You know, at times I had to tell people about my condition because to look at me, they might think, "Well, okay, why is he parking in the handicapped spot? Because, well, yeah, he's a little bit shorter than everybody else, but other than that, and he kind of walks with a limp, but why, why is he parking in the handicapped spot? He's not really handicapped."

And so I had to explain to people in the dorms and different things, "Well, this is why, because I get tired out if I have to walk too far, and I can't carry the groceries that far," or whatever. So, but once that explanation was made, people say, "Oh, okay, well that makes sense." So there was a little bit of that that I had to go through with having the milder form of OI.

Gina:     Carol, have you got any thoughts on this?

Carol:    Well, while I can't speak directly to OI, I do stand 4 feet 10 inches and have rheumatoid arthritis, and so I'm quite sure that some of the challenges faced by both Erin and Evan I faced as well. And I think that if the campuses are given enough notice of different needs, then in fact they get the bathrooms ready, the doors ready, the dormitories ready, and really have done a very good job in working with the families to make sure that the residence halls are accessible and that the classroom facilities are fully accommodating for the students. It's those challenges when we find out about a need just a week before classes begin, or find out about something just at the last minute that, you know, we don't know where to turn, and sometimes we have to make different adaptations.

Sometimes a student's condition changes, and the adaptations and accommodations need to change as well. I think we need to speak to that, that sometimes a student during a specific illness or dealing with, as Evan mentioned earlier, a fracture, sometimes we have to do things a little differently on a temporary basis. Sometimes conditions degenerate, and we have to do things on a more permanent position. And so we work together on that, but given enough notice and having the student really be able to express his or her needs and express what it is that they're feeling in terms of being challenged, usually we can make it happen. And we can make it happen so that it's something that's in place for the student, and they don't have to ask for it again.

Gina:     Wonderful answers. And we've got our first call coming in from Julie. Julie, welcome. What's your question?

Julie:    My question is, when visiting prospective colleges, what are some key questions to ask the people at the colleges?

Gina:     Erin, do you want to start that? Because you did a lot of work trying to decide what college was going to work for you.

Erin:     I think the key question to ask them is what type of accessibility needs that they will meet for you. What will they do for you, because some people are willing to do more than others. Also ask them about the surrounding town and the surrounding area and if that's accessible as well, and about what types of social programs that there are that you can get involved in and those sort of questions because the accessibility question, you really have to go and see it for yourself before deciding on a college. You really have to do a lot of legwork.

Gina:     And Carol or Evan, did you want to add anything to that?

Evan:     Well, one thing I'd like to add, is that Erin pointed out what sort of accommodations the school is willing to make. Added onto that is what sort of accommodations are they willing to make if you have to miss time away from school? Not only just adaptations there on the campus, but what if you have to take an extended leave during a semester? How would that work, and what sort of things would they put into place? Do they have classes on the Internet? Do they post notes on the Internet? Things like that would be things to ask for.

Gina:     And Carol.

Carol:    Absolutely. I'd add to that, what are the campus policies for incomplete grades, for continuation of courses? Sometimes some campuses have courses that continue across two semesters. What do they have in terms of accommodations in note taking, tape recording, and so on? What is it that the students are receiving right now?

I think as Erin described her visit, I would say most important is to talk to other students. Do you feel supported here? Is this a friendly place? I mean, those are questions that you want to find out. You want to see, what is the whole culture of this campus? What's the whole campus life all about here?

What's it like for me if I am a commuter student? Or what opportunities are there for me to take part and feel that I'm a part of this campus and not simply a traveler who just stops by to go to the lectures? But how can I take part? What's available in terms of sports? What are the other extracurricular activities? And you'll find out, I believe, more about that by talking to other students instead of reading the catalog or talking to administrators.

Gina:     Julie, did that answer the question? Did you have something else you wanted to ask?

Julie:    No, that's what I was looking for. They also answered my question about who I should go to and ask, if I should just talk to the ADA office or if the students would be a good resource. But, yeah, that definitely answered my question.

Gina:     That's great.

Carol:    Certainly, Julie, you should contact the ADA or disability service office, whatever it's called on that campus, and you should talk to those folks because those are going to be your advocates for getting the courses and for getting the job done and for making recommendations about accommodations. But I really think you want to be a part of, as I said earlier on the webcast, be a part of a campus that's active. Don't go in the summer when everything's closed down.

Gina:     Julie, thanks for your question, and good luck to you.

Julie:    Thank you.

Gina:     We've got Jennifer joining us on the phone now from California. Jennifer, what's your question?

Jennifer: Oh, my question is, I'm graduating from high school this year. I'm a senior, and I was wondering if colleges provide personal assistants or funding for personal assistants because there's certain things that I might need help with, like getting things in and out of my backpack and that kind of activity.

Gina:     Good question. Carol, what do you know about that?

Carol:    The colleges and universities are not required to provide personal care attendants for services within the college. However, many offices of disability services do have persons who can assist you with tasks during your academic program while you're on campus. It's the personal care needs that need to be taken care of in the dormitories and on field trips and so on which the campus does not provide, and I would suggest that persons who do need personal care attendants work with the rehab commissioners who are currently providing those services or see what can be done in terms of making arrangements for those services. But the colleges and universities are not required to provide those.

Jennifer: But you're saying that there's someone at the disabilities office that could help me in finding someone?

Carol:    Many times, what they will do is assign someone to a student who might need, as you mentioned, getting books in and out, assistance with lunch, and so on. And so it's a matter of what's already being provided on that campus.

Jennifer: Oh, okay.

Carol:    And those activities that happen mostly within the campus walls. You know, within the lecture halls and the labs and so on. As I say, if a student goes off campus or is in an internship program or a professional program, or if the student needs assistance in the dormitories and with personal care, then those things are not provided off-site. But many times there are assistants within disability services.

Jennifer: Okay. Is this something I would have to pay for, or is it...

Carol:    No, in any public institution, all of those services are free. The student with the disability pays for absolutely nothing. In some campuses that are the private campuses for the most part, there are additional services that can be on a fee-for-service basis.

Jennifer: Okay. I think I have one more question. Actually, my mom has a question.

Diane:    In the dormitory situation, though, what would be the best way to go about finding a personal attendant for there?

Carol:    Independent living centers and other such local resources would be helpful in identifying persons who would be available to do those services. In addition, I'd find out if any student currently attending that campus had a personal care attendant. Sometimes dormitories - just thinking of the University of Illinois at Champaign-Urbana, [it] has dormitory rooms that have connecting rooms for personal care attendants.

Diane:    Oh, really.

Carol:    So, they've not only anticipated the need, but they have made dormitories that allow for that. And so it's a matter of finding out what the policies or procedures have been on that particular campus in the past. And certainly, the disability services office could be a resource in where else to contact locally for personal care assistants.

Diane:    Okay. Thank you very much.

Carol:    You're welcome.

Gina:     Thanks, and Jennifer, all the best to you, too. An exciting time, but pretty challenging, too, huh?

Jennifer: Yes.

Carol:    Good luck, Jennifer.

Jennifer: Thanks.

Gina:     We have a question from Mary and Rob in California by e-mail. Mary is the mom, Rob is her son, and he happens to be on the second floor. Apparently this is his choice, so he's wondering about fire drills. How do they evacuate the student? He slides down the stairs on his bottom, and someone carries his wheelchair. There's a cart they could put him on, but with 30 cables and rods in his spine, they decided not to try the cart, and is this something that you've run into before? Carol?

Carol:    Yes. The cart is really not a great idea for anyone. With the student's choice of a second-floor dormitory if in fact a first-floor choice was given - I don't know that to be a fact - sometimes dormitories don't even have student rooms on the first floor. They have the cafeterias and the social life, and so on, on the first floor, and the rooms actually start on two. If it's a building without an elevator, as I'm assuming it is, then the student's choice of the second floor, he has to understand what he's going to be facing in evacuation. Usually if it's a dormitory situation where there is an elevator, what happens during a fire drill for any person who is a wheelchair user is that the fire department evacuates the person through the elevators by turning on the elevators, especially if there's an automatic turnoff during a fire alarm situation.

I have to put on my ADA hat now, though. As the compliance officer for the campus, lifting students and taking them out of their wheelchairs and taking them down the steps and putting them on carts and so on is a real liability for the campus, and I would strongly recommend that the persons in disability services as well as the students themselves and their families be clear on what the evacuation is of that dormitory, and of all of the rooms and all of the possible locations that this student might be at during a fire drill. That might be in a library, it might be in a laboratory, it might be in a classroom. Who knows where it is? But the evacuation policies are very important to not only everybody be aware of them but make sure that the student who's going to have to follow those knows what they are as well.

Gina:     We have an e-mail question from Joe, and this is about the door issue. Joe wrote to us that he's a freshman. He feels he's had a positive experience so far, but he's struggling to open the doors in those buildings on the campus. There are no automatic doors where he is, and he's curious to know if there's any law or section of the ADA or 504 that would require the automatic doors on college campuses. I think, Carol, you talked about how a lot of colleges are adapting, putting more in. Are they required to?

Carol:    There's nothing as specific as electronic doors in either of the laws, and, however, what it does say is that the campus must be accessible to the student. And I would make sure that the persons listening be aware that they need to make their needs known and go to the disability service or ADA office and see what is the plan for that campus.

When are these electric doors coming? What can be done in the meantime? Are there push doors that require less pressure than the ones that are there now? Are there handles and other such things that can be modified immediately in anticipation of the electronic doors, and so on? In other words, what's the campus's plan of action here? This is unacceptable; therefore, what's going to be done to make it acceptable?

Gina:     We've got another call, and this one is about beyond college and looking at careers. Ann joins us on the telephone from Portland. Ann, what's your question? Hello, Ann?

Ann:      I know that my mobility changes depending on if I have a fracture or not. Are there some careers that will allow me to work no matter how mobile I am?

Gina:     Good question, Ann. Thanks for that one. Evan, do you have some kind of suggestions? We talked to you a little bit about what career choices there might be, but...

Evan:     Right.

Gina:     But, realistically, are there mobility issues?

Evan:     There are, and I think that one way to look at it would be from a standpoint of what do you like to do. You know, some people are very able to travel. They travel well. But I know that even getting on an airplane with a wheelchair is a difficult thing, and so it may not be something that you want to do, so maybe you don't want to look into a career that requires airline travel.

I think that there's so many careers out there that involve writing, that involve education, that involve data analysis, that you can do from anywhere. And I know this summer, I pulled my back, and this was the first injury that I had had in a long time. Fortunately, it was just muscular, but it put me at home in bed for two days, and what did I do with that? Well, I had my laptop, and I had a bedside table, and so I ended up working on some of the projects that I would be working on at my desk at work, analyzing data and different things like that.

And so I think that whether you go into accounting or law or health care, there are jobs like that, and the thing to do is to kind of get outside the box of, "I can either be a doctor, a lawyer or an Indian chief." You know, that there are a lot of things that are available, and I think that there are a lot of great resources online that help match your skills and capabilities with your interests, and those are good sources.

Gina:     I would think it would take having an employer, also, who is willing to give you that little bit of flexibility.

Evan:     Exactly. I think, that's probably a reasonable thing to say up front, is to say, "Hey, I have this condition. What would happen if..." And my employer looks at me and he says, "Well, you can still look at the computer at home, can't you?" Which is exactly right. He's coming from a standpoint of he's a physician, and two years ago, he was an avid runner, and he fell and broke his hip. And he was out for about three months trying to get his hip re-healed. He looks at my situation completely differently now, or at least with a lot more understanding.

Gina:     That it can happen to anybody.

Evan:     That it can happen to anybody. And I remember seeing him right after his hip replacement, and I said, "You know? I really didn't think that this would be the situation. I really thought that these roles would have been reversed and that I would have been lying in that bed and you visiting me. Isn't this ironic?" But what did he do during those three months? He didn't shut down. He did work from home. When he was finally able to come back to work, he went to work in a wheelchair, and gradually rehabbed and got back into the full stream of things.

And I think if you're up front with an employer, I think that most will be accommodating that way because if you know what you're doing and you're an asset to the business, they don't want to lose you just because you have something that takes you out for a limited time.

Gina:     Great. Carol, did you want to add something?

Carol:    Oh, no. I think Evan said it all. I mean, I think that he's given perfect examples of ways that employers, in this day and age, are being more flexible with everyone, and the way the jobs are these days and the way the electronics are, as Evan said earlier, he's in an airport in Phoenix. I mean, that these things can go on and continue, and it doesn't have to be the nine-to-five job that it used to be.

Gina:     We've got an e-mail question from Jordan in Boston. Jordan writes, "I am in high school and have been active as class president, swim team member, and basketball team manager. How can I find a college that will allow me to get involved with these types of extracurricular activities?" Carol, do you want to take that one?

Carol:    Make sure they've got a good swim team, and go and do it. Certainly, athletics is an important part of many people's careers in college, and again, on the Internet, one can find out about the different types of sports on a particular campus and just give a call to the office and find out what kinds of opportunities there are within those sports to be either a participant or a scorekeeper or an assistant in some way on those teams, and I think that there shouldn't be much of a challenge in all of that.

Evan:     I think that what's very important to the college life is to get involved. You don't want to spend four years shuttling between your dorm room and the classroom. I think you want to be involved in some of these extracurricular activities because that's where you make friends that last a long time, and I think that's where you gain experiences that are going to help you in the job place because it's going to be different challenges than just cracking the books and studying.

Carol:    I fully agree. Can I add something to that? It's not immediately pertinent to this question, but it gets me on my soapbox. There are so many opportunities now for a student to attend college right from their living rooms, you know, these virtual colleges, take courses at home and so on. But I would caution folks to think about the issues that Evan just raised.

There's a lot more to college than taping the lectures and getting the notes or taking the course on line. There's the whole socialization aspect, the whole aspect of sports and teams and really preparing for what's out there in the world. And, so, while courses online have their place, and while during a time of recuperation they might be absolutely necessary, I would caution students who might be considering a virtual situation rather than a real, live experience on a college campus to reconsider.

Gina:     Because college isn't just an end to a means, right?

Carol:    Absolutely. So much to gain for everybody.

Gina:     We've got a question now on the telephone. Tea joins us in Seattle. Tea, what's your question?

Tea:      Hi. What can a student who has OI do when a fracture prevents finishing a course?

Gina:     Evan, I think you talked a little bit about this. What do you do if something came up? You had that incident where you injured yourself, and what do you do then?

Evan:     Well, in that particular situation, the first year of college, I ended up withdrawing from school. And then because my conditioning was so poor, I ended up living at home for the second semester and attending George Mason University, which, as it turned out, was a newer campus and met my needs much better, and I could live at home.

After that, I had other breaks, other fractures, throughout my college career, and what ended up happening was because my conditioning was better, my recovery time was less. And so, what I ended up doing was pulling out for a couple of weeks, initially following the fracture, and I tend to fracture femurs, so that's my thing. And so I would pull out for a couple of weeks, and then tape the courses while I was gone, and then come right back and then pick up with them.

Nowadays, I think if I were to have to pull out for a couple of weeks, I know that at Virginia Commonwealth University, the lectures that I give there are simultaneously broadcast over the Internet, and then they're archived so that students that miss a lecture can just pull those up with my slides on there and so they don't miss any time at all. So I think it really is workable, especially with the technology now.

And I think letting folks know up front that this might happen in the disabilities office will prepare them so that when you give them a call on Monday morning or so and say, "Hey, I had a problem over the weekend," they're ready to go right into action and say, "Okay, well, let me pull up your course list. We'll get notes from this person, this person, this person."

Gina:     That's great advice. Just plan ahead and make sure that you've got something in place, huh?

Evan:     Yep.

Gina:     We've got a caller, Jennifer, on the phone. Jennifer, what's your question?

Jennifer: Hi. My other question is, do you think that it is a good idea or a bad idea to, in your personal statement, write that you have a disability or about your disability? And also I was wondering kind of what you guys wrote on your personal statements, so I kind of have an idea of what they expect.

Gina:     Oh, when you're applying for college. Erin, what about you?

Erin:     Well, I think it's good to be up front with people just so that when you show up for your interview, they're not shocked, for one thing, and also because they might be more willing to help you out and they might be able to initially connect you with the disabilities advisor on campus.

Gina:     Good advice.

Erin:     For your interview and for your tour.

Evan:     I agree with that. And I think that there's a lot to be said for the things that people with OI have to deal with - even in the high school setting - that prepare you to go to college, that shape who you are. And I think that when you're making a personal statement that that's something that's reasonable to tell people about, not to say, "You have to let me in because I have OI," but to say, "This is how it's affected me. This is how I've adapted to it. These are the barriers that I've overcome."

Gina:     And Carol, what do you suggest? What are the colleges looking for?

Carol:    I certainly agree with that. The colleges, of course, can not require, and it's illegal to ask whether or not a person has a disability before entering, but in talking about a personal statement, who you are, what challenges you faced and how you overcame them because after all, you're writing an application for college, and that says something. And so I think that disclosing the information as you need to, to help explain how you've overcome some of the barriers that you've faced and made you a stronger person in order to be at the stage that you're at right now, and what kinds of challenges you might foresee you'd be facing, but understanding that working together, you're going to make it. And having that positive sense of, "Here I am, and I'm choosing you, College XYZ, to help me learn and help me get my career on track." And basically, "I'm coming, and so I need to let you know what some of my needs might be while I'm there."

Gina:     And I have a quick e-mail question from Kristin. She says, "Do colleges provide special transportation between classes and between activities, for example, a handicap van? Is it realistic to ask a college to transport a person with OI to places other than class, such as campus events?" Carol, can you help there?

Carol:    The campuses are required to provide adaptive transportation if they provide transportation for everyone. In other words, if there are already buses and vans and so on that circle a campus. Evan said it rightly, some of these campuses have buildings that are very distant, and the campus might provide bus service or van service between classes or to the library or to the cafeterias or back to the dormitories. If that is the case, then the transportation must be accessible transportation.

Now, to off-site, to downtown to the movies and to the pizza shop and so on, I believe that Erin mentioned earlier to get to know the community in which the college is set. Find out how accessible the surrounding community is. You don't want to be in a place where you can only get to the college cafeterias - not to say that the food isn't terrific, but you want to...

Evan:     Good old Domino's.

Carol:    But you want to make sure that you can take part in the activities that surround your campus as well.

Gina:     That's great. We are almost out of time, but before we go, I would like to invite each of our guests to leave us with an overriding take-home message for our listeners, so Carol, let's begin with you.

Carol:    Well, sure. What you've heard today says that in helping to plan for a college education, you need to visit the campus; you need to find out as much as you can from the Web sites, you need to not be shy about calling the folks at the disability service offices. And upon your visit, meet with students, sit in on a class, see what it's like, and remember that you may be facing some unique challenges, but you are facing the same challenges as many other students who are taking on the college career. And just be as prepared as you can academically and as realistic as you can with what your career hopes and dreams are, and then just go for it.

Gina:     Great. Carol, thank you so much.

Carol:    You're welcome.

Gina:     Evan, what would you like to leave our listeners with from a college graduate's standpoint?

Evan:     The three things that I learned in going to college were, one, to be physically prepared for what you're going to undertake, and not underestimate the demands that are going to be placed on you, and just to have a real good idea of that.

Secondly, don't worry about fitting in. The great thing about college is that freshman year you're with a whole class of people that are worried about fitting in, and you're going to find people that you relate to, and it's going to be a good experience. And I think the friends that you make and the friends that you keep look beyond the disability, and they don't see that at all. They see the good person inside. And so concentrating on that person is most important.

And then the third thing that I learned was not to let OI be center stage when picking a career. You need to pick something that you enjoy, something that means something to you, something that you get up out of bed every morning and say, "Wow, I'm going to go do this." And I've been fortunate in my career choice. I love what I'm doing, and if I have to overcome a barrier that is OI, I think it only makes me stronger and helps me relate to people and my patients better.

Gina:     Evan, you've been a real inspiration. Thanks for all the advice and insight you've given us.

Evan:     Thank you.

Gina:     Erin, what advice or comment would you like to leave our listeners with?

Erin:     I would just say that you really need to start early, and you need to ask a lot of questions and to go to the campus and really look around, and not just pick a campus because it has a certain career, because often you don't really know what you want to do. So you should have your options open.

Gina:     That's great advice, and Erin, your college is lucky to have you.

Erin:     Thank you.

Gina:     We sure appreciate the time you've spent with us. And thank you to everyone who submitted questions. I apologize if we didn't get to your personal question, but I hope we gave you expert information on your topic of concern. And thanks again to our guests, Carol and Erin and Evan, for broadening our understanding of what students with osteogenesis imperfecta face when attending college and ways they can overcome the obstacles.

And thanks, of course, to all of you in our audience. As it's often been said, information is power, so we hope this program has given you comfort, power, and hope, too.


As we close, I want to remind all of our listeners to be sure to click on the "Take Our Survey" button on the [replay] page to give us your feedback about this program and to help us bring you future programs. And if you'd like to make a comment after completing the survey, send us a message by clicking the "Submit a Question" button. The survey and your comments really help us in planning future programs and evaluating how we did today. For HealthTalk Interactive, from Seattle, I'm Gina Tuttle. We wish you the best of health.

Announcer:  Thank you for participating in today's Osteogenesis Imperfecta Foundation webcast produced by HealthTalk Interactive. We look forward to seeing you at our next webcast in January 2001, which will provide information for parents on OI childcare after the diagnosis.

Thanks for joining us, and if you found this program helpful, please tell others about it. This is HealthTalk Interactive for the Osteogenesis Imperfecta Foundation.

 

 


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