Session (1 of 3): Disability Research: Why it Matters
Interview with Emily Ladau
Emily Ladau is a passionate disability rights activist, writer, speaker, and digital communications consultant whose career began at the age of 10, when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. A native of Long Island, New York, Emily graduated with a B.A. in English from Adelphi University in 2013. She is dedicated to harnessing the powers of communication and social media as tools for people of all abilities to become informed and engaged about disability and social justice issues.
Emily works with Concepts, Inc. supporting key U.S. Department of Labor Office of Disability Employment Policy initiatives. She is also the Editor in Chief of the Rooted in Rights Blog, a platform focused on disability rights issues. Additionally, Emily runs a business through which she both manages and provides consultation services regarding online presence and communications for disability-related organizations. More about Emily’s work can be found on her website, Words I Wheel By.
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: Welcome to all of you have 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 Institute for Research. And today we're speaking with Emily Ladau, a writer, a speaker, and a disability rights activist. Today's topic we're going to focus on the use of research and advocacy. Emily we're really glad that you've been able to join us today.
EMILY LADAU: Thank you for having me.
GEMAR NELOMS: So as we start off today, would you mind sharing a little bit about yourself, and some of the key areas both professionally and personally where disability research plays a role for you.
EMILY LADAU: Absolutely. I work as a communications consultant, a writer, and a speaker. I do all of those things focused on disability rights issues. And my top priority is coming from a place of personal experience and insight, but also combining everything that I do with information that's grounded in research whenever possible. So a lot of what I do requires me to bring the research into the talks that I give. Whether it's talking about social media usage, whether it's talking about my own personal experiences with advocacy, whether it's talking about language usage, I try to combine the research aspect of things with the personal aspect of things.
And then additionally, I also provide a lot of background research for some of the work that I do with an organization called Rooted in Rights. And I know we'll get to that a bit later in the interview, but that often requires research. Whether I am putting together a script for video, whether I am just doing some fact checking for a blog post, because I am the editor of the blog, so research plays a big role and a lot of what I do. And it complements a lot of my personal experience that I share.
GEMAR NELOMS: That's excellent, and that is a really wide range. And given that range, can you highlight just a little bit, for any one of those, or all of those, why is research so important in that work? So for example, people who blog, they really can just blog and not have to back anything up. And we know that there's tons of bloggers out there that do that. So what is compelling for you to make research important enough in any of those roles that you find it a vital tool to use?
EMILY LADAU: When it comes to talking about disability, I struggle quite a bit with the fact that anybody can put anything out there on the internet, and that it can often easily be taken as fact. I noticed this happening quite a bit when it comes to things like research around autism and vaccination, just as one particular example. And I think that a lot of people are not quite knowledgeable on how to determine what research is accurate and most thoroughly compiled.
My top priority is to focus on talking about disability in a way that is accessible to people who may not necessarily have a lot of experience with disability. And to give a personal spin to it, but also to find research that really backs up what I'm talking about in a legitimate way. And not just grabbing whatever resource backs up what I'm saying. I know that it can be difficult to find the resources that you need and the accurate research that you're looking for, especially when there's so much going on when it comes to talking about disability. But I make it a priority to thoroughly research any claims that I'm going to make when it comes to disability, and then use my personal experience, just as an anecdotal way to back it up. And I think in doing that, in combining the research and the personal experience, that's what really makes for the most compelling and also truthful and accurate information about disability.
GEMAR NELOMS: So that actually leads into two other areas that are part of our focus of this series. Where do you actually go to find research? And how do you determine the quality of that research? What’s your filter related to quality? Do you have go-to places that you feel like, I know if I'm here, it's going to be sound, versus other places that may make you say, uh, I'm not so sure. How do you gauge both of those?
EMILY LADAU: I think that the great thing about being directly involved in the disability community is that I am often given very easy access to research just based on the people that I communicate with. And I understand that that's not the case for everyone, especially people who may be newer to disability. But I would say that the best way to ensure that you're getting accurate information is to find resources that are authentic. So whenever possible, if you can find research that was conducted either by or in tandem with someone who actually has a disability, that automatically, I believe, strengthens a lot of the validity behind the research because it's coming from a truly authentic place.
It's important to have experts and people who are professionally trained in different areas. But it's also really important to have that disability input when it comes to finding accurate research. For me, a lot of it will come from interactions on Facebook or on Twitter. Of course, I don't take everything at face value, but oftentimes people will share journal articles amongst themselves with the disability community.
For example, there is a group on Facebook called Teaching Disability Studies. And I think that being part of a community like that is a really good way to ensure that you're getting research from people who are right in the weeds doing it and whose work I know that I can trust and respect. And I can also get referrals for research when I'm looking for it. I also like to go to journals that are specifically focused on disability. For example, Disability Studies Quarterly is a great place that I go when I'm looking for articles that are often written by and for people who actually have disabilities. A lot of it, for me, is about authenticity. And while I know that there is a division between the personal and the research aspect of things, I also think that disability is unique in that having identity as part of the impetus for doing your research, really adds to what the research can give back to the community.
GEMAR NELOMS: Great. That's really, really helpful. And in that you have talked about some specific approaches and strategies that folks should keep in mind when they're identifying and using research. Does that change at all? Or is there any other aspect, when you're using that research to help inform public opinion makers or policy makers so from your perspective, is there anything else that you might add as part of an approach or strategy when you know that it's going to be used for that very specific purpose?
EMILY LADAU: Yes, I think that the most important thing, if you're looking to influence policy is again to have anecdotal information as part of your research. Numbers aren't really what get people when it comes to creating policy. And I know that data is important, but at the same time having research that incorporates the human aspect of the disability experience. Qualitative over quantitative research, I think is really, really important when it comes to influencing policy decision.
Because numbers may influence a decision, but it's the stories, it's the people behind the policy, and how the policy will impact those people that is incredibly important when it comes to the type of research that you should be bringing forward. Absolutely come prepared with your numbers, but also come prepared with that qualitative analysis of here's the story that a person told of how X, Y, Z impacted their life. And here's how your potential policy is going to impact their life.
And I think that disability is often treated as something that doesn't really have a human side to it. When, in fact, it is one of the most human experiences that anyone can have. Because it's so intrinsically part of who a person is if they have a disability. And I think that if you're not including that human perspective along with the data, then you're really doing yourself and your advocacy work a disservice.
GEMAR NELOMS: Which leads into something you mentioned earlier and another role that you have, where you're editor-in-chief of Rooted in Rights. And that's a website whose mission is to tell authentic accessible stories that empower the disability community to advocate for disability rights. I'm curious, is there something that you would say to researchers about, look this is one of the ways in which we want to use research so that we can help tell our stories? Is there anything you would love to see from researchers to make that a more accessible way of either reading the research, identifying the research or incorporating the research? Is there something that you could say to researchers, hey, please could you do this or consider that so that we'd be able to utilize what you put out there more for this purpose?
EMILY LADAU: Absolutely. And I think that you said the word that I was going to focus on, which is accessible. The problem with research-- and this happens even within the disability community when we put out research when we're focusing on academia-- it often is not accessible to the general public. And it's especially not accessible to people who may have cognitive disabilities, or who in general just may not communicate or understand in terms of jargon and in terms of very, very heavily academic research.
While I understand that research can further a lot of the work that we're trying to do, I think it's also really important to make the research accessible to the community that the research is about. And I think that's what's so often ignored when it comes down to the work that researchers do. Even if you put out a version of a journal article, let's say, and it sounds heavily academic and then it follows the rigors of an academic structure, I would really urge researchers to consider putting out perhaps a supplemental piece written in plain language. And I think that people often seem that plain language means that something is, quote unquote, "dumbed down," or made for stupid people, or something like that. I can't stress enough that plain language is a matter of accessibility.
And it makes your work more accessible to everybody. I can probably say with pretty good authority that even people who identify as academics would appreciate a plain language version of research. But especially, when it comes to the work that I do for Rooted in Rights, we have bloggers, and we have people who create videos and they tell their stories. And then when we reference research, it would be great for that research to be accessible to our audiences. So that way people will say, hey, I really understand where this person is coming from both personally and because they have understandable research to back it up. If researchers can just take the time to make the incredibly important work accessible to the people whose lives could potentially be impacted by that incredibly important work, then I think that would be a huge step in the right direction.
GEMAR NELOMS: Wonderful. That is really helpful information and especially coming from someone, Emily, who has such a large variety in your background, wearing many different hats. We are almost at a close of today's interview, but I'd love to know is there anything else you'd like to share, either with the audience from the researcher's perspective? Or with those who may not wear the same hats that you wear, but definitely utilize, or would like to utilize, disability research to help further their own effort in this space?
EMILY LADAU: I think the most important thing is for researchers, and the general public, and the disability community to really be meeting in the middle somewhere. While it's important for researchers to focus on making their research accessible, I also think that it behooves people who are advocating around disability issues to seek out some of that research, to back up our claims. And I think that by meeting in the middle and really working together, we're going to be able to further our causes. But doing so or requires effort from both parties in terms of accessibility on one side and seeking out the information on the other side. And I think that if we can all come to an agreement that that's incredibly important, to include the research, but also to have the research available to people in a way that makes it inclusive, I think that we're all going to be better off in how we achieve the progress that we're looking to achieve.
GEMAR NELOMS: Excellent. Emily, thank you so much. Once again we've been speaking today with Emily Ladau. She is helping the Center on Knowledge Translation for Disability and Rehabilitation Research help folks recognize the use of research in advocacy, and its importance. And we're really, really glad that you were able to be with us today. Thank you so much.
EMILY LADAU: Thank you so much for having me.
GEMAR NELOMS: Thank you to everyone for attending this video-cast in our series on Disability Research, Why It Matters. After you've viewed all three discussions in this 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 web chat 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 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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