Marta: Welcome to the NARIC Spotlight Podcast! I am Marta Garcia, NARIC’s Bilingual Information and Media Specialist, and I welcome you to our inaugural episode of our Conversations with Our Director series. Mark Odum, NARIC’s Director, joins us to discuss his experiences, as a person with a spinal cord injury, before and after the signing of the Americans with Disabilities Act, what still needs to be done, and the research funded by NIDILRR in this area.
So, welcome Mark, to our inaugural episode of the Conversations with Our Director Series. Would you mind sharing a little bit about yourself with our listeners, please?
Mark: Hi, Marta. Thank you very much for having me. I appreciate this part of our podcast series and am looking forward to a number of these. You’ve asked about NARIC, the National Rehabilitation Information Center, and I’ve been with NARIC pretty much its entire existence.
The feasibility study for the project was in 1975 or 76 and I started as a publication specialist in 1978, when NARIC was in a small office on the campus of the Catholic University of America as part of its Library School. I started as a publication specialist, working my way up slowly through the management of the information specialists and writing the newsletters and starting to put together some of the earliest copy to help out with the online card catalog. NARIC is one probably one of the oldest collections to have an online card catalog. It’s never been a manual one. It is one of the things that I am proudest of.
We have been in the forefront: We had a bulletin board – one of the first bulletin boards – with our funding agency. We started a website. Of course, we have been involved with the internet. It’s been a real great challenge and it’s been an exceptional number of years with NARIC to see how it’s grown and how many people we help. And not only the folks and people with disabilities, but the fellow researchers and the funding agency and all other areas of the government. So, I have enjoyed being a part of it.
Marta: Amazing! It sounds like there is a lot of history there.
Mark: Indeed.
Marta: What drew you to NARIC and becoming our Director?
Mark: Quite simply, it’s the information! Having a spinal cord injury and being interested in a cure and what the latest research is, I have always been a part of the research community. I’m lucky enough to have had a PC in my home since 1980 and realizing the power of being able to manage information and NARIC managing the online systems was very natural. So, it’s the information that drew me in personally at first. But, also in a way, it was a way of paying back. Not only did the information help me, but I realized that managing this information and providing this information helped people. So, it was kind of a way to pay it back. People helped me along the way. And I always felt a duty to that effort. I like making footprints for people. It’s making a difference and helping others. NARIC is a great vehicle for being able to do that.
Marta: So, some people remember what life was like before the signing of the Americans with Disabilities Act, also known as the ADA. Some were born after the ADA was signed and may not know what life was like before that. Would you mind sharing some of your experiences of what life was like, as a person with a disability, before and after the signing of the ADA?
Mark: No problem, Marta! I was 19 years old when I dove into a pool and was injured with a spinal cord injury and, as you can imagine, I put the years together and 1974 was well before the Rehabilitation Act of 1973 was even signed five years later. In any case, right after I was injured, I went back to college for two years and went to the University of Maryland, College Park, and in 1974 there really was no accessibility. I had many classrooms… I was in the journalism school, and I had to be carried up three flights of steps to a journalism lab. And, so, I quickly realized the accessibility, or non-accessibility, was quite a challenge. The internet certainly helped out with my studies, but getting around was something different.
And I was elected to the student government, really with one thing in mind: To help with accessibility. With that, I established the disability services office at the University of Maryland, College Park, and it was one of the first ones in any of the universities. With that – that work around campuses and classes. Beyond that, I worked on accessibility for stadiums and labs at the university and that moved me on beyond that throughout my years to work on disability studies for the Baltimore Orioles and the Baltimore Ravens. So, I have kept that as a hobby – to stay with all of the accessibility pieces. The key to that is the ADA, when you think about it, has been about accessibility and physical accessibility. In those early years, that is, more than anything, what I worked on more than anything else.
Marta: July is that time of year when we celebrate the signing of the ADA. I understand that you were at the signing. What was it like to be at such a historic event?
Mark: The first thing that I remember is that it was a typical hot and humid day and that there was a large, large crowd on the South Lawn of the White House and there were people with all types of disabilities. It was a great celebration! I think that the number one theme to it all was that we belong. And it felt like we were no longer second-class citizens. It was a real moving event to see so many people with so many disabilities. Because, you know, you often think of people who use wheelchairs or maybe some blind folks. It was well beyond that. To meet up with people from all over the country and working with NARIC – there were researchers with disabilities, and I was able to meet them for the first time. It was really a great event, even as hot as it was. As taxing as it may have been for a few people, it was a special, special day and one that you never forget!
Marta: I am sure! It’s been 34 years, actually, since the ADA was signed. What do you think has improved and what still needs to be done regarding the rights of people with disabilities and their inclusion in the community, Including at work and school?
Mark: I think the biggest thing is that it has become accepted as a legitimate civil right having a disability and expecting to have the same opportunities as anyone would. So, as I said, when the ADA started, you think of curb cuts – but is equal opportunities. And more importantly, what you see now, is making the internet fully accessible for folks who are deaf or blind to make sure that they get the same information and access the same information that everyone else can. But it’s even beyond that… going back to some of the physical pieces, there is a big push now to make air travel accessible. It is very difficult flying in a chair. Not only to have personal space, be able to use the bathroom, but also to protect my wheelchair. I can’t tell you how many times that I have traveled and had something go wrong with my chair because someone was not trained right... I don’t want to judge, but my wheelchair has come back with a problem.
The other big push, I think, is employment. We all know that the employment rate is horrible and is slowly getting better, but so much more needs to be done. So, in all of this, DEIA is so critical to include everyone and making that opportunity available to everyone. And that’s what I think the ADA means today.
Marta: We can’t talk about the ADA without talking about NIDILRR-funded research about the ADA and the technical assistance that the NIDILRR-funded ADA National Network Centers provide. Would you tell our listeners a little bit about that research, please?
Mark: Indeed! Again, as I started out saying, it’s the information and research that has brought me close to NARIC. And NARIC has quite a collection. It is its own little fiefdom, in a way. NARIC collects information that has been funded by NIDILRR, but we are very good about going after as much of what has been produced as we possibly can and making it accessible to everyone. So, if you go to the NARIC website and do a quick search, for instance, there are over 850 NIDILRR-funded documents that are in the REHABDATA database itself. As part of that database, we have research articles, and this includes many that are funded by NIDILRR. I say there are over 1,000! One of the things about our database is that it gives you the first 1,000 documents. So, if you’re a researcher and writing a paper or doing research, 1,000 documents is a good place to start. In addition, other things that you can look up are that we have questions from the community, some of which have to do with the ADA, that deal with civil rights and accessible transportation, as I mentioned. Of course, NARIC is very good at collecting everything and putting it out in English and Spanish. We also have the community resources page on the ADA, which is also available in Spanish.
Again, I really think it has provided us, and I say us because I think of us as a person with a disability, and no longer do we have to be embarrassed to ask for accessibility. The ADA has sanctioned this. You can no longer say, “I don’t have to do this for your or you can’t go here.” No longer does it work that way. I think it legitimizes, I don’t know if I can use that word or not (laughs). Being in a chair, and a power chair at that, I get noticed and it is easy to assume that I am a leader. I have always felt that others will be judged by my behavior and, so, I am a pioneer and a leader in this. So, I don’t mind being out front. And part of being out front is carrying the ADA flag and making sure that it is pushed proudly.
Marta: Thank you, Mark, for sharing your experiences and thoughts with our listeners! We are thrilled to have you on here.
This is Marta Garcia and I thank Mark for joining us today. The resources and NIDILRR-funded Centers mentioned in this episode are available on this episode’s description. The transcripts for this episode are available on naric.com. To learn more about the ADA, NIDILRR-funded research, and related topics, please contact NARIC’s information specialists.