On this episode of our podcast series, Jess Chaiken and Mark Odum from the National Rehabilitation Information Center share their observations of the past, present and future of the disability rights movement.
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Zoe Joyner: Hello and welcome to our second episode of Dear Nondisabled People. I am Zoe Joyner and today I will be cohosting this episode with Arielle Silverman.
Arielle Silverman: Welcome. Today we have two guests with us, Jessica Chaiken and Mark Odum from the National Rehabilitation Information Center. I will go ahead and let you guys introduce yourselves. Jess?
Jessica Chaiken: My name is Jessica Chaiken. I am the media and public education manager at the National Rehabilitation Information Center. Mark?
Mark Odum: I am Mark Odum, the project director of NARIC. It might be noted that Jess and I have been together on this project for what, some 18 years, so we will probably be thinking the same thing as we answer some of these. In addition, I also have a spinal cord injury which I sustained 44 years ago next month. I’ve been very active in the spinal cord injury group and an advocate for all people with disabilities. That’s me.
Arielle: Thank you both. We have prepared some questions that we would like both of you to answer for us. Zoe do you want to begin with the first one?
Zoe: Sure. What challenges have you had in your personal and work life?
Jess: Mark, I’ll let you take that one.
Mark: Okay. As I said I have a spinal cord injury. Since I was injured in 1977, you roll the clock back. That was before the Rehabilitation Act and almost all legislation as we come to know it now like the ADA. Having a disability then was quite different than having one now. I am a full-time wheelchair user and even simple things like curb cuts in cities to get up and down curbs were unheard of in those early days. My challenges were physical in nature as far as the physical barriers. In addition, in the early days you still had a lot of folks that didn’t know how to approach a person with a disability and weren’t really sure. If you didn’t have a personal association with someone with a disability, you probably had no idea what it was about, so you face those –I don’t know–I don’t want to say that they were prejudices, but certainly people having certain associations and feelings and working around them.
As far as work life, I have always felt it has been a pretty level playing field. One thing in work is that you are judged by what you produce. Pretty much work is, as it should be, a results-oriented type of atmosphere. If you are producing well and working well and have good results, then I think you do well just the same as most anyone else. Jess, you might want to expound on that a little.
Jess: I think as far as our team is concerned, everybody is coming to the table at the same level. We are all bringing our individual experiences. I am not a person with a disability, but I have educational experience in disabilities. I have a masters in ASL linguistics. I think we all came to this job not necessarily because we were people with disabilities but because we were focused on providing the right information resources to people who need them in the best way possible. The biggest challenge for me has been tracking new technology, how it is being used by the community—by people with disabilities and rehabilitation professionals and making sure we are using it to the best advantage.
Mark: I agree. I think everybody on our team certainly comes in with a special sense of helping out and helping people. You hear about paying it forward and it isn’t necessarily something like that, but we all have an extra sense of doing something helpful. On the information end, I talk to our information specialists frequently about when they do find a piece of information or they help someone out, that really makes a difference in someone’s daily life. I like to say it’s as good as a paycheck. It might not pay the rent but the personal satisfaction you get in helping someone out and providing that kind of information is really shared by each of us heart to heart.
Arielle: Great, thank you. The next question for both of you, and Jess you can start, is how has your childhood impacted your career choices and anything that has impacted your decision to work in the disability field.
Jess: In terms of my childhood, I really loved the hunt for information. I like doing the research. I used to joke with a friend of mine that I really liked looking stuff up. She said, “You should probably be a librarian.” As it happened, that’s the career that I ended up in. In terms of working in disability, I really came to it through ASL because I have a love of language and I discovered American Sign Language late in my college career and decided to pursue that. Besides that, I think I was probably like most Americans, you kind of have a peripheral experience with disabilities until you find yourself in a position where you are unable to function like you did before. Since then, of course I have a much more profound understanding. I’m sure that will change over time as well.
Mark: I think for myself in childhood, I always leaned towards writing and being a writer. I also happen to have quite a love for sports so early on I kind of felt like I must be a sports writer somewhere along the line. I have a degree in journalism. I had two years of college finished before I was injured in a diving accident. At that point, and again back on the subject of not a lot of accessibility, I realized I wasn’t going to get back into the locker room very easily to interview sports figures. I realized that I still had this love of writing, but being a sports writer wasn’t going to happen. Along with the writer goes hand in hand with research as Jess said, looking things up, whether it’s background information or whatnot. I have always enjoyed looking things up and wanting to be close to the research to know the latest going on. There is something to be said for that hunt. It’s neat to have a challenge. You might know something is out there on the Internet and it’s just a matter of trying to find it and hunt for those different gems, whether it is for background information for an article or getting back to some of the primary work of NARIC to help someone out with a problem they are having. I think that is the childhood tie-in I have.
Jess: Definitely the wish to connect the right thing to the right person, whether it’s as librarians doing research or as a writer bringing experiences to the reader, that’s where we’re both coming from.
Arielle: Next question?
Zoe: What is the mission of your organization?
Jess: NARIC is a library and information center and we focus on disability and rehabilitation research. Our core mission is to collect and disseminate the results of projects funded by the National Institute of Disability Independent Living and Rehabilitation Research and get that research out into the community. We maintain a fairly large collection of research literature and then we also have these information and referral services that, more often than not, connect people to organizations rather than researchers, but we do spend a fair amount of time and energy developing resources to highlight what the NIDILRR community has created, the work that they are doing, and getting people engaged in their research. Do you want to add anything to that Mark?
Mark: No, I think that’s pretty close. I think at a secondary level, we kind of reached out and made sure that we are looking at the information and trying to expand its use and usability. We have a couple of existing projects now where we are putting research into lay persons language to broaden its appeal. We are trying to disseminate information as widely as we can.
Arielle: how has legislation impacted the disability community or impacted NARIC in your opinion?
Jess: The most recent legislation that impacted NARIC was the Workforce Investment and Opportunity Act which moved our funding agency NIDILRR from the Department of Education to the Administration for Community Living and the biggest impact that had for us is it really made us focus on community participation. What does it mean to ensure that a person can interact in their environment and engage in the community of their choosing and what can we do to make that possible? I will let Mark speak to other legislation.
Mark: I think generally, legislation has helped people with disabilities, their family members, and advocates for folks with disabilities, realize that they belong, that they are entitled and have civil rights to everything that one might have if they didn’t have a disability. It makes a big difference I think when you approach with the feeling that “I belong” instead of the feeling that “I need a handout.” Generally, I think folks now know that they belong, and they are looking for information because they have a right to that information. You might be so crass as to say I pay taxes and I know my taxes go toward this, so I want it. It’s no different than using the anecdote that there’s a big uproar about televisions and having closed captioning put in every television. Some in the community said why do I need to pay for this technology I can hear, and I don’t need this. Very quickly, the deaf community came back with “All my life, I’ve been paying for the sound you listen to.” You belong, and you have a right for every piece that everyone else has a right to. It is refreshing, and I think it has been embraced recently. That is what I would say in addition to Jess’s part.
Zoe: How do you think the life of people with disabilities has changed over the past 50 years?
Jess: I can only speak observationally, so I will let Mark answer that one.
Mark: I’m over 50 and approaching 50 years as a person with a disability. But certainly, again with the legislation, that the ADA has brought forth both physical barriers and just generally acceptance. There’s no child with a disability that doesn’t know the ADA. There’s no child that doesn’t know that many years ago, they weren’t allowed in public schools. They were able to get that public education through legislation. That is an equalizer quite honestly. The more folks with disabilities get outside and are participating and have been allowed to participate and the doors have been open to participate, the more they associate with folks that might never have come across someone with a disability. That is an awareness that helps folks that wouldn’t otherwise have associated with someone with a disability realize “You know what? Any preconceived notion I had isn’t right. They are just like me in every way. They eat breath bleed.” We are all human beings, so I think in many ways that is what has changed. You see a lot more folks with disabilities in television and in the movies. Disability is becoming commonplace. Have we gotten as far as I would like to see yet? No, but we are working on it. I expect it will.
Jess: One thing I have seen with the research, certainly the research that has come out of our funding agency, is the shift from talking about disability in terms of not inability and in terms of clinical presentation and what’s called the medical model, and instead talking about how the person interacts with their environment and how the environment impacts their ability to interact, so the environmental model. Part of that has to do with visibility. People with disabilities are now out in the community, in school, at hotels, in businesses so we now have to talk about how do the barriers in place, what effect do they have and how can we remove them? How is an organization improved by simply bringing people of diverse abilities in. And the fact that we are using terms like inclusion and diversity instead of symptom and function, I think that has made a huge difference in the lives of people with disabilities. I hope so, at least observationally.
Arielle: Last main question for both of you is do you think that things are going in a positive or a negative direction today for people with disabilities.
Jess: I would say both.
Jess: Yes, I think the changes in our current climate, both the actual climate and political climate, are influencing my answer there. There has been so much progress and I think we are headed in the right direction in so many ways. I think we have some outmoded ideas and attitudes that need to be finally put away because they keep creeping up and pulling some things back, things like the idea of sheltered workshops, minimal pay, nursing homes, health insurance and healthcare especially. Those I see pulling back on some of those improvements myself. How about you, Mark:
Mark: I would answer this quite differently two years ago than I might today. And first, do realize that you are hearing from one of the all-time open-minded optimists, so I am always going to feel like it’s going positive one way or another. And I think, you know, the genie is out of the bottle. You might have some people who are trying to stuff it back in or don’t see things but that’s not going to change the tide. It might slow the tide down a little bit but it’s still going to continue forward. For one thing, folks with disabilities and people who are associating with them, again, it’s a growing minority. This country, in another thirty or forty years, I would like to believe, is going to be a group of all minorities. There is not going to be a majority. Part of that is folks with disabilities are going to be one of the many minorities that are running, helping this political climate move forward and helping everybody move forward. Still positive!
Zoe: Do either of you have any final thoughts or would like to share any other skills you need for your job?
Jess: I think the biggest skill that I need for my job is just the ability to listen and understand. Sometimes, people call us and all they are looking for is someone to hear the issues that they are having, but really it’s about listening to understand what their needs are and responding with the right pieces of information and the right contact. Whether you want to call that active listening, listening for content, or listening to the goal, I think that is a powerful skill for any librarian to have, especially the ones at the reference desk or answering the phone.
Mark: Well first, I want to thank you for this opportunity to talk about NARIC and some of the pieces here and it leads me into something that, actually Jess, neither of us quite mentioned but the role that technology has played in this and the opportunity you have with the podcast. My goodness, just a few years ago, no one had any idea what a podcast was, let alone the ability to quickly reach a lot of folks out there so the technology is also on the side of people with disabilities because it is making things that much easier when designed the right way. Sometimes, you have to go back and retrofit some things, but generally, I think technology and folks with disabilities are embracing it and taking ahold of it very quickly to their advantage. They are going to make it work for them. They realize what an opportunity it is. It’s neat to see.
Jess: Yeah, I agree with that.
Arielle: Well thank you to both of you for your time and your invaluable perspectives.
Jess: Thank you.
Mark: Thank you for having us.
Jess: Much appreciated.
Mark: Look forward to hearing it and telling all my friends.