Session (2 of 3): Disability Research: Why it Matters
Interview with Joe Mangum
Joe Mangum is a native Texan who currently resides in Bulverde, TX; a small town outside of San Antonio. He is a husband to Amanda Mangum, and a father to a 7-year old daughter, and a 5-year old son. What is wonderfully unique about Joe’s children is that both of them have special needs. His daughter has Down syndrome, and his son is on the autism spectrum. Joe and his wife believe that whether your child has special needs or not, you always want the very best for your children, and you want to be the best you can be so that you can give them the support and love they need to be able to live up to their fullest potential. He is grateful to God for blessing him with two amazing children, and wouldn’t want them to be any other way than the way that they are. Joe believes that he has learned a lot about himself, others, and life in general through parenting his special kiddos, and knows that they have and will be a blessing in teaching others about life as well.
GEMAR NELOMS: is a Senior Technical Assistance Consultant with American Institutes for Research, which houses the Center on Knowledge Translation for Disability and Rehabilitation Research (KTDRR). She is active in AIR’s network of disability-oriented researchers and technical assistance providers and her KTDRR colleagues welcome her contributions to this webcast series. Her portfolio of work focuses on disability services, career readiness, secondary and postsecondary education and public health. She leads research and evidence-based technical assistance efforts with states and nonprofit organizations and develops tools and resources to enhance their organizational and program capacity. Prior to AIR, Ms. Neloms’ work in the disability field has included the oversight, implementation and scaling of the National Collaborative on Workforce and Disability for Youth’s professional development modules for youth and workforce development professionals and the provision of youth development programs for all youth, including youth with disabilities.
GEMAR NELOMS: We want to welcome all of you who've tuned in today. My name is GeMar Neloms and I'm with the Center on Knowledge Translation for Disability and Rehabilitation Research at the American Institutes for Research. And we're continuing the conversation about disability research and why it matters. And today we're speaking with Joe Mangum. And Joe is the father of two children, and he's also a stay at home dad. And today Joe will share his perspective as a parent, and as a parent of two children with disabilities, on how and why research matters to him and his family. Joe welcome. We're really glad that you had the opportunity to join us today.
JOE MANGUM: Thank you. Thanks for having me.
GEMAR NELOMS: So we like to start all of our conversations by asking folks to share a little bit about themselves, and in this case we also hope that you will share a little bit about your children.
JOE MANGUM: Well, my name is Joe Mangum. I live in Bulverde, Texas. Married to my wife Amanda and I've got two kids—my daughter is 7-years-old and my son is five. They're good kids. My daughter has Down syndrome and my son has autism.
GEMAR NELOMS: And so knowing what today's topic is— related to disability research— why is that important to you as a parent and what additional type of significance might it have for you given the disabilities of both your children?
JOE MANGUM: Well I think it's— the most important thing to me was just to learn and find out more about both of them, because both of them came on as kind of a surprise. Whenever— we didn't know our daughter had Down syndrome until after she was born. And so of course, a few hours after she was delivered is when we got the news that she had Down syndrome. And of course, that's kind of shocking to anybody and you kind of have to gather as much information as you can as fast as you can, just so you kind of know what you're dealing with.
And then with our son it was kind of a slower gradual deal, because whenever he was a baby we were— didn't know and weren't sure. But as it went on his speech is what kind of led us in the direction of autism. And then, just wanting to know because you really always want the best for your kids and it's hard to figure out where they're going to go at that point in their life. But as much research as you can find out there and information, you get the better on the parent and the family and for the kids.
GEMAR NELOMS: And so those are two very different situations right? In that first situation with, your daughter it was brand new to you. And I'm really curious where did you go to find information, to find this research? And how might that be different than once your son was born? And where you went to find research for autism versus Down syndrome?
JOE MANGUM: Well with Down syndrome of course it was— happened real fast like I said. So I was still in the— while she was in the NICU, I was doing a lot of my research. And I probably started out where everybody else does, and that's with Google. And just kind of started at Wikipedia pretty much. Just so I could figure out the definition of exactly what it was, and the different names of what it was called.
And then I started looking— there is the Down syndrome Society and go into all the main, I guess, Down syndrome places out there. And that was one of the first ones that I found. And basically started reading all of the first few paragraphs on a bunch of web pages I guess, to find out exactly what it was and what I could do. And kind of what the— even what the extremes are. The worst case scenario or maybe the best case scenario, of course, it doesn't always give you that full information. But at least we had an idea where we were with it.
GEMAR NELOMS: Right.
JOE MANGUM: And then with our son, that was a little different because it's one thing it be able to read a lot of information about autism, but it's different to, I think, to watch videos. And so I went to YouTube and I YouTube’d a lot of autism kids that were kids of the same age as my son just to see how they acted and how he acted and if that was kind of the same. And that's kind of how I got started with that one.
GEMAR NELOMS: Great. And so you also mentioned where you're from. And I know that that's a very rural area, so some of the ways in which you look for research were technology based right? You got online to see what you could find. But does being in a rural area impact your ability to find and use disability research? Or has it not made a difference?
JOE MANGUM: I don't think it's really made a difference. But there is nowhere around here where I could like actually go sit in front of someone and talk to somebody. Or bring my kids or whatever. I'd have to go to San Antonio for that. So I guess there's nothing really available in my immediate area, but with the internet, you can do lots of cool and crazy things.
GEMAR NELOMS: So what are some of the questions that you ask yourself now? So now that both children are a little older—
JOE MANGUM: Right.
GEMAR NELOMS: —what are some of the questions that you ask yourself? And how do you determine the quality of research? So even in the process of, OK what am I looking for? What is it that I want to know? And even if I find what it is I want to know, what's the quality of what I find? How are you gauging the quality of your research?
JOE MANGUM: Well, I think the main reason that research for my kids now is because I think I've have learned a lot about autism, I've learned a lot about Down syndrome. And I don' think there is any way you can know everything about those. They're very broad deals. But I think mainly now is just kind of how can I make them better, to where they can be independent and do stuff for themselves? Maybe get a job, maybe move out, maybe just be able to have a day-to-day conversation with their friends and family.
I think I gauge my research and quality of my research is of course, you can go down and read reviews. I think mainly testimonials where you see videos of parents and their kids. I think those are really good. Of course, social media has a lot on there. There's The Mighty. They got Down syndrome and an autism deal, where you go to Autism Speaks. And there's just a lot of videos where you can— I don't know— watch a lot of videos that can be very encouraging to parents.
But I think whenever I go to websites and I'm reading you can tell some web websites I guess do it more, or— I guess the love of kids that have the problem. And some of them, it seems like, kind of do it for money.
GEMAR NELOMS: Are there things that tip you off to that— that tip you off to where this is really a disability research focus, and it's about the quality of research. And it's about supporting efforts related to disability and disability services. Versus this is really more of folks who are trying to make money. Are there any themes that you see when you're noticing the difference between those two?
JOE MANGUM: I'm not really sure if there's themes. I think it's the way they go about presenting themselves on the websites. You can always— you can tell the difference between websites quality and how much money that they're actually putting into it. But I think whenever you're going down and reading to where it seems like they're just posting stuff from parents to other parents, or whatever like that. As opposed to come do this and donate that, and maybe you can get these shirts and hats and koozies and all this stuff.
I think going to all those walks and stuff, I think it's a good thing. I think there definitely needs to be money in it. But I think it needs to go to more research and development for helping these kids, or people, or whoever. In my case my kids. And less towards of kind of like just a business that's run off of autism or Down syndrome.
GEMAR NELOMS: So it's funny, you've talked about how you use research and it's for a day to day desire and need to provide the best for your children.
JOE MANGUM: Right.
GEMAR NELOMS: Which is something every parent, or at least every parent I know, strives to do. What would be some of the suggestions you would make to researchers about either what they could do differently related to research, particularly from an accessibility perspective and a knowledge translation perspective. Understanding as a layperson, I want to be able to understand what you put out so that I can use it for my purposes. Or what is it that you think that you might recommend to researchers that they could keep doing, so that it remains relevant to you and your children?
JOE MANGUM: Well I think mainly it's— to me it would be— the best thing that has worked for me is watching videos and just reading people's stories. And what road they have been down, and how it worked out. And mainly that's with our daughter with Down syndrome. Those kind of videos.
And then for, our son I like to compare him to other kids. And I think being able to see videos of different kids, because the spectrum is huge. And some of them are pretty far off and some of them are pretty close to being like a regular kid. I hate to say that, but it's weird to say that. But it kind of how I feel about it. But I think with autism it's— a I like just to kind of gauge where he's at with kids who have the same disability that he does.
GEMAR NELOMS: So it sounds like what you're saying is its fine to have that data and that information, but put the human story with it so that I can see what that looks like. And put faces, right, to the data. Especially in the case of autism— that spectrum is so huge— to be able to allow you to recognize, all right so this maybe what this means for my child. And how I can take the next step that I want to take to support my child and his development. Is that accurate? Sound accurate?
JOE MANGUM: Definitely. A lot of kids they're all different, but I think they learn in a different way. But I think a lot of autism kids learn in the same way as each other. And I think just getting— showing other parents on ways that you can kind of open those kids up, I guess, would be good to see.
GEMAR NELOMS: And so speaking to other parents, are there any strategies or approaches other than some of what you've already talked about, that you would either offer to them or advice that you would offer to them as they're doing their own research?
JOE MANGUM: I can't think of anything. Just tell them to be wary and read a lot. There's a lot of stuff out there. And I think if you can just take as much information as you can, but just weed out the stuff that you can tell really doesn't apply to your situation. And I don't think people are really trying to put out bad information. I just think that, from their personal experience, I think that's what they've had. I think people need to see that too, because that might help them because they might be going down that same road.
GEMAR NELOMS: Great. Well, this has been very helpful and we really appreciate having a parent perspective. We know that disability research is used in all different forms and aspects, and we're really appreciative of the time, Joe, that you've given us today to talk with you about it and to offer your perspective. And thank you so much for sharing your story with us.
JOE MANGUM: Thank you very much again for having me.
GEMAR NELOMS: Thank you to everyone for attending this video cast and our series on Disability Research— Why it Matters. After you've viewed all three discussions in the series, we encourage you to fill out an evaluation form by following the link at the bottom of the slide. We'll email it to all who registered and you will also be able to find this link on our webcast information pages at www.ktdrr.org.
As you know, this evaluation serves to help us plan our future events. In addition, you may also ask your questions to our presenters in this series. And please be sure to include your email address if you would like to directly receive responses back to your questions.
Before we close we'd like to thank the National Institute on Disability, Independent Living, and Rehabilitation Research— also known as NIDILRR— for supporting our activities in these video, webcasts, and other events.
The names of Joe’s children have been redacted from this written interview and the audio podcast.
The contents of these interviews were developed under grant number 90DP0027 from the National Institute on Disability, Independent Living, and Rehabilitation Research. NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of these interviews do not necessarily represent the policy of the Center on KTDRR, American Institutes for Research, NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.
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