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Lyndsie Koon

Lyndsie Koon applies her interdisciplinary interests in exercise and disability to conduct research that aims to improve the health and well-being of individuals with disabilities across the life span.

In this interview, Koon talked about her ongoing and upcoming projects, as well as her experience at the KU Life Span Institute. This interview has been condensed and edited for clarity.

When and how did you start your research journey at KU and the Life Span Institute?

I came to KU in the fall of 2019 from the University of Illinois where I was finishing a post-doc. I am an assistant research professor and the associate director of the Research and Training Center on Independent Living under Dr. Jean Hall. My area of focus there is physical activity, exercise, and disability across the life span. I previously worked with older adult populations, and that has converted more into adults who are aging with long-term disability, which is a really important population because people with disability are living longer lives. We want to maintain functional independence for them as long as possible and the aim is to do that through sustained engagement in exercise and physical activity. 

What are some of your current projects and research?

I recently received an internal grant award for a project about increasing physical activity for manual wheelchair users. It's a two-year pilot project where we will attempt to motivate the participants to be more physically active using physical activity technology (e.g., Fitbit, Garmin). 

I serve as the qualitative research lead on a National Institute on Disability, Independent Living, and Rehabilitation Research, or NIDILRR, funded project: Research and Training Center Promoting Interventions for Community Living (PICL) where we are assessing the effects of home- and community-based interventions on community engagement for people with disability.

I also continue to work with my colleagues at the University of Illinois and the Rehabilitation and Engineering Research Center TechSAge (Technologies to Support Aging-in-Place), where we are continuing efforts to understand activity challenges in depth among older adults with long-term vision, hearing, and mobility disabilities. I oversee the mobility disability group, which for this round of data collection, include adults who are aging with long-term multiple sclerosis, which is called the ACCESS project, or Aging Concerns, Challenges, and Everyday Solution Strategies

I am also funded by the Kansas Disability and Health Program where I am implementing a remote, physical activity intervention called WOWii, or Workout on Wheels Internet Intervention, using tele- and activity tracking technologies to increase exercise participation for people with mobility-related disabilities

Those are the projects that fund me currently, but then I have my work that I'm working very hard to get funded, and I'm really excited about it.

What research are you seeking funding for? 

In the literature, it's called High-Intensity Functional Training (HIFT). It’s like CrossFit, defined as constantly varied, high-intensity, functional movements. HIFT is innovative and inclusive and can be implemented with limited equipment in nearly any setting for a variety of disability types and support needs. It’s comprised of a variety of exercise modalities that involve functional, whole-body movements intended to mimic activities required in everyday life such as sit-to-stand, lifting overhead, transferring, or ambulating with or without supports.

There are a lot of positive functional outcomes that may result from this type of training, but additionally, there are strong perspectives of community and relatedness, competence gains, and perceptions of autonomy and empowerment. For example, our pilot data show that participants report having gained confidence in transferring independently and improved perceptions of strength they never knew they had, and a strong sense of community among other HIFT members.

Adaptive training for people with disabilities
Individuals with the Adaptive Training Academy participating in an exercise program. Credit: The Adaptive Training Academy

What excites you about this research?

What drives me is learning about these adaptive athletes, as they refer to themselves in the HIFT community, and the potential of an empirical lens really illuminating the important outcomes from their experience with this unique exercise program. Doctors and other healthcare providers do not often encourage people with disabilities to exercise more, mostly due to the fact that they don’t know what to recommend or where to send them. Or worse, the perspective is to tell people with disabilities “don't go too hard” or “don't lift that weight.” HIFT has an entirely different approach that views participants as capable and competent, and the context is entirely adaptable to the individual, making it a well-rounded, inclusive, and effective exercise environment for people with various types of disability.

What interests you in sports and exercise science overall?

I was an athlete growing up and in college and coached soccer for many years, so I have a natural drive toward sports, with a particular interest in the psychosocial aspect of it all. Furthermore, healthcare costs and chronic conditions are preventable with lifestyle choices such as physical activity; I am driven to create a more physically active society through any means necessary.

What have you learned since joining the Life Span Institute?

I feel like I can really succeed here at KU, and the Life Span Institute has set up great supports. But I think one of the most important things I've learned since being here is the need to conduct inclusive research. “Nothing about us without us” is the ADA motto, and research efforts that include key stakeholders and members of the target population are imperative to obtaining their input from start to finish. From government policy, medical procedures, developing exercise equipment for people with disabilities, we need to conduct these efforts with people with disabilities.

I write with the sad news that Frances Degen Horowitz died this past Monday, March 15, 2021.  Frances was the founding chair of the Department of Human Development and Family Life (HDFL) and, with Richard Schiefelbusch at the Bureau of Child Research (now the Life Span Institute), conspired to establish the University of Kansas as a national hub for research on human development, language, learning, and intellectual/developmental disabilities.  She is, in large part, responsible for the success of KU and the Life Span Institute in these fields that continues to this day.

Frances served as an Associate Dean in KU’s College of Liberal Arts and Sciences and then as KU’s Vice Chancellor for Research, Graduate Studies and Public Service.  During her tenure as Vice Chancellor, she established the groundwork for the creation of what is now the Kansas University Center for Research (KUCR).  Frances eventually left KU to assume the presidency of the City University of New York Graduate Center in the early 1990s.

Frances HorowitzFrances made seminal contributions to developmental psychology and was among the founders of the field of infant studies.  Drawing on her background in learning theory, she devised a method for assessing visual learning in human infants that adjusted for differences in the rate at which individual infants acquired information.  She laid the groundwork for and promoted the study of interactions between infants/children and their caregivers as a major source of variance in developmental outcomes.  She championed the study of preterm infants and was responsible for the promulgation of methods for measuring the biobehavioral status of newborns.  She published over 130 books and articles in the field, many of became widely-cited classics in the field.

She was active in numerous professional organizations promoting behavioral and developmental science, including the American Association for the Advancement of Science, the American Psychological Association (APA), the American Psychological Society, and the Society for Research in Child Development (SRCD), and the International Society for the Study of Behavioral Development.  She served as President of Division 7 (Developmental Psychology) of the APA, the American Psychological Foundation, and (most notably) as President of SRCD.  She served on numerous editorial boards during her career, and was editor of the SRCD Monographs from 1976-1982.

This is a deeply personal loss for me. Frances brought me to KU as a postdoctoral trainee in 1982.  Her mentoring was profoundly wise, tolerant, and unfailingly kind, and I will always be thankful for my time with her.

John Colombo, PhD
Professor of Psychology
Director, Schiefelbusch Institute for Life Span Studies
Interim Dean, College of Liberal Arts and Sciences

Hashim Raza

Contact: Jen Humphrey, jenhumphrey@ku.edu and 785.864.6621

LAWRENCE -- Language development in toddlers usually proceeds from gestures and garbled sounds into words and eventually full sentences. But for some children, language development can be delayed – even when there is no clear evidence of neurological, sensory intellectual, or emotional problems. 

For these children, Specific Language Impairment, or SLI, affects their ability to acquire a language despite normal intelligence. The estimated prevalence of SLI in children is 7 % in the United States. It can persist into adulthood. Children with SLI are normally at a higher risk of lower academic achievement, difficulty in developing peer relationships, social anxiety in early childhood, and reading impairments. Twin and family aggregation studies indicate that genetic factors are involved in SLI. However, the underlying genetic influences are not well known in this disorder.

To study the genetics of this disorder,  M. Hashim Raza, KU assistant professor in the Child Language Doctoral Program, has been awarded $439,782 through the National Institute of Health for a three-year project focused on extended families in Pakistan.

Consanguinity, or cousin marriages, are prevalent in Pakistan and increase the risk of inherited disorders. The custom, which helps retain wealth and family traditions, is relatively common in some Middle East and South Asian countries; in Pakistan and Saudi Arabia, up to 70 percent of marriages are consanguineous. However, it can lead to higher chances to inherit identical copies of detrimental genes, which leads to increased risks of genetic disorders such as SLI. 

According to Raza, genetic studies of large consanguineous families with SLI are important to identify the gene pathways involved in this poorly understood, genetically complex disorder. Studying such large families with well-defined phenotypes, or sets of characteristics, are needed to increase the likelihood of identifying genes affiliated with the disorder.

Some of the premises for this project are previous findings and research by Raza and colleagues on the family-based genetic nature of persistent stuttering. Genetic causes of stuttering were not precisely understood when Raza and researchers at the National Institutes of Health successfully mapped several genes and for the first time, identified gene mutations associated with stuttering in 2010 and 2015 by studying extended families from Pakistan, West Africa, Brazil, and United States.

He noted that the long-term goal of the project is to further understand how gene pathways are involved in the development of typical and atypical language.

“The genetic studies of unusual families with defined phenotypes help us to map genomic regions with high confidence, leads to identify the particular genes,” he said. “Once we are able to find the genes, we can target those genes in multiple populations to find the prevalence of the genetic variations associated with this disorder.”

Xigrid Soto

 

When 11-year-old Xigrid Soto moved to the continental United States from Puerto Rico with her family, her new community and the school lacked the support she needed.

“I was placed in a classroom for special needs by accident,” Soto said. “I had to teach myself English, and that was a hard experience. And so, from that, I was really determined to have it not happen to other people.”

Now a postdoctoral fellow at the Juniper Gardens Children’s project, Soto is a passionate researcher on bilingualism, early literacy, and language development. Her researches focus on promoting the educational outcomes for young bilingual children in the U.S. 

In her nine years of experience as a bilingual pediatric speech-language-pathologist, or SLP, and as an early childhood researcher, Soto has seen a rise in the number of bilingual children in the U.S. At the same time, she has also noticed that other SLPs receive limited training and materials for assessing and treating bilingual children who have communication impairments.

“Although we have a really large bilingual population in the United States, most SLPs aren’t really trained on how to work with bilingual kids or adults,” Soto said. “So, what happens is that there’re a lot of misdiagnoses,” Soto said. 

There are several aspects that make bilingual children with communication impairments different from their monolingual counterparts. To have a communication impairment, bilingual children need to demonstrate difficulties communicating in both languages. However, assessments are often created with only monolingual children in mind. This makes it more challenging for speech-language pathologists who are typically only trained to work with monolingual children.

That led to a recent $15,000 2020 Multicultural Grant Award from the American Speech-Language-Hearing Association (ASHA), awarded by the national professional organization for speech-language pathologists.

The one-year study, conducted by Soto and her colleagues Anne Larson, a research associate at the University of Minnesota, and Meaghan McKenna, a postdoctoral research fellow at Juniper Gardens, aims to complete a national survey of SLPs to determine their training, confidence, and barriers when assessing and treating bilingual children. The second objective of the study is to apply the results of the survey to develop a professional development program. The program aims to train both monolingual and bilingual SLPs in working with bilingual children. Soto hopes the study will assist both practicing SLPs by helping them feel more competent and confident when working with bilingual children and their families.  

“I want the results of the study, specifically the survey, then to be distributed through our national organization and then to university programs for us to really evaluate the curriculum that we’re using right now to train SLPs,” Soto said.

Her passion is to get more students from diverse linguistic, ethnic, and cultural backgrounds to be interested in the field.

“I think traditionally, lots of people are applying a monolingual English lens to the world and we really need to move past that: to look at people as being multilingual, and really be culturally sensitive and responsive in the way that we work with them,” she said.

What important for SLPs is to find and use strategies that are supportive and specifically catered to bilingualism. That way, even if a practitioner doesn’t speak a child’s language, the SLP can still support the child.  

In addition to the current study, Soto is also in close partnership with the bilingual early childhood center located in Kansas City, El Centro. She has also developed Habla DLL, a website that offers free materials and resources to parents, teachers, and SLPs who work with young bilingual children. These activities are part of her mission to translate research into common practice, and to improve the support for academic and social needs of bilingual children. 

“To me, you shouldn’t do research that doesn’t have an impact in this world,” Soto said. “I’m very privileged for many reasons, and I want to use that privilege so that when important educational decisions are made, I can speak up on behalf of people who aren’t always heard.” 

Story by Ha Tran

Illustration by Elizabeth Newell

Book cover art for MTSS textInvestigators at a KU education research center have distilled twenty years of education research into a new book focused on an equity-based system to support all students.

Amy McCart, co-director of SWIFT Education Center, and Dawn Miller, associate director of technical assistance, co-authored Leading Equity-Based MTSS for All Students. The book aims to show how school leaders can create equity-based multi-tiered system of support, or MTSS, using the resources they already have in their schools. 

MTSS is an organizing framework that uses data to inform decisions coordinating academic, behavioral, and social resources to meet the needs of students in a dynamic and timely fashion. An equity-based MTSS provides access to the core curriculum with a continuum of support for students across the full range of learning needs. 

“In this book, we aim to show how to create equity-based MTSS that makes a lasting impact on each student and bring about a culture of schooling that demonstrates high levels of academic, behavioral, and social outcomes,” McCart said. “Equity-based MTSS becomes a means to an end: equity-based thinking, doing and achieving.”

 

 

Handbook cover artworkA field guide to research on the scope, methods and etiology of addiction published by Cambridge University Press and featuring chapters written by three KU scientists aims to be a comprehensive resource for researchers in this broad field. The Cambridge Handbook of Substance and Behavioral Addictions, edited by Steve Sussman, includes chapters authored by David P. Jarmolowicz, Derek D. Reed, and Michael Amlung, all scientists at KU’s Cofrin Logan Center for Addiction Research and Treatment at the Life Span Institute. They are among 100 authors from six countries who address topics such as philosophical and legal issues in the field, behavioral economics, the strengths and weaknesses of clinical and research methods, neurobiology, cognition, environment, as well as the prevention and treatment of addictions both familiar and seldom studied.

"This new handbook provides a comprehensive account of current scientific understanding of causes, consequences, and treatments for a range of addictive disorders," said Amlung, associate director for training at the Cofrin Logan Center and associate professor of applied behavioral science. "We are excited to contribute multiple chapters to this volume alongside many of the world's leading scientists and clinicians in the field."

 

 

celebrating 30 years of the ADA
On July 26, 1990, the passage of the Americans with Disabilities Act marked a new era for people with disabilities. The landmark legislation prohibiting discrimination based on disability aimed to assure that that people with disabilities have the same rights and opportunities as everyone else. The law covered several areas of public life, including employment, education, transportation, and public and private places that are open to the general public.

The KU Life Span Institute has conducted research aimed at improving the lives of people with disabilities for more than 60 years. Together with many units at the University of Kansas, we are marking this anniversary through our media and programs. Please join us for: 

Look Back, Look Forward: The ADA at 30

"Look Back/Look Forward: The ADA at 30,” will be held at 3 pm October 14. This virtual panel features:

  • Jean Hall, director of the Institute for Health and Disability Policy Studies and professor in the KU Department of Applied Behavioral Science
  • Lex Frieden, professor of biomedical informatics and professor of physical medicine and rehabilitation at the University of Texas Health Science Center at Houston
  • Anjali Forber-Pratt, assistant professor at the Department of Human & Organizational Development at Vanderbilt University
  • Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress

The panel will be moderated by Michael Wehmeyer, chair of the KU Department of Special Education, Ross and Marianna Beach Distinguished Professor in Special Education, and director and senior scientist at the Beach Center on Disability. 

Advance registration is required for this free event. 

 

 

 


Judith Heumann KU visit website

Lifelong Disability Rights Champion Judith Heumann to Participate in Campus Celebration

Judith Heumann, internationally recognized disability rights leader and activist, will celebrate the 30th anniversary of the Americans with Disabilities Act (ADA) with the University of Kansas and Lawrence communities and guests worldwide Oct. 28-29.The Life Span Institute is a proud co-sponsor of “ADA 30 – Nothing About Us Without Us – A Celebration with Judith Heumann,” scheduled for Oct. 28-29. The events, which may be held virtually because of COVID-19, include a keynote by Heumann and additional programming to be announced in fall 2020. The two-day celebration is organized by the KU ADA Resource Center for Equity and Accessibility and 44 other campus and community partners. More information and an event schedule are on the event website.

 


Ray Mizumura-Pence, associate teaching professor of American Studies and co-Director of the Disability Studies Seminar at the Hall Center for the Humanities, prepared a list of resources across books, websites, film and other media for those who would like to learn more about the Americans with Disabilities Act and people with disabilities. 

 

For Brian Boyd, director of the Juniper Gardens Children’s Project at the KU Life Span Institute, a passion for autism research ignited at a summer camp job during his undergraduate years. It led to a career dedicated to early interventions for children diagnosed with autism spectrum disorder and a focus on community-based research.

In this interview, Boyd reflects on the beginning of his career and the direction of his research today. This interview has been condensed and edited for clarity. 
  
Where did your interest in autism start?
In the middle of my undergraduate degree, I went to work at a summer camp for children with autism. The first week I had a camper who was nonverbal. He also had an intellectual disability and seizure disorder. It was a tough week. He tried jumping in the camp pond, he threw a chair at me and ended up having a seizure that landed him in the hospital. He had a tantrum in the middle of the hospital. It was then that I realized this is what I wanted to do for the rest of my life.

The experience had a deep impact on me. There was something fascinating about autism, people with autism and even though it was challenging and difficult, it felt meaningful. And so I knew after that first week I wanted to keep doing it.

How did you get your start in research?
After the recommendation of a mentor at the camp, I called Dr. Gary, the director of TEACCH, the statewide autism clinical, training, and research program based at the University of North Carolina. He essentially interviewed me on the spot and offered me the job. He really took a chance on me.

For a year and a half I did a variety of things. I was officially a predoctoral intern but I really just worked in several capacities: in the preschool classroom where we did an early research study, at an adult residential center that served aging adults with autism, and as a job coach for people with autism. It allowed me to get a wide range of experience working with people with autism.

What are your interests in autism spectrum disorder?
In general, my work is focused on intervention — I work with families or educators to help them implement the best practices for helping young children with autism.

I also want to better understand the children with autism that have what we term repetitive behaviors and circumscribed interests - a narrow, intense focus on a subject, for example.

Early in my career I met a preschooler whose first word was ‘pentagon’ -- not ma-ma or da-da but pentagon. So I wanted to know what it is about these sort of atypical interests that would motivate this to be a child’s first word. I want to research how to best leverage these behaviors to potentially improve other kinds of skills.

Why did you choose to join Juniper Gardens?
Research at Juniper Gardens has had a huge impact on the field of early childhood special education, so I was already familiar with the work being done here. The other main appeal was the chance to be a part of a research center where the work is very community focused and community engaged. Involving community members in the early stages and development of our research is important to myself and Juniper Gardens.

It's really about not just giving back, but exploring how we collect our knowledge as researchers to work with community partners and bring about real change.

As a volunteer at an Olathe, Kan., nursing home, 19-year-old Isaac Swindler enjoyed helping people by escorting residents to the chapel, bringing them meals, and assisting with laundry. But when the nursing home was forced to limit the number of visitors to the facility in response to the spread of COVID-19, Isaac became one of the millions of Americans to lose his position – and his routine.
 
That sudden change to daily life can be difficult for anyone, but for someone like Isaac, who has autism spectrum disorder, it can be an extraordinary disruption, said Issac’s father, Sean Swindler. Individuals with autism often struggle with rapid, unpredictable changes to their routine, he said.
 
“Social distancing needs to happen to keep everybody safe, and we are absolutely in support of it,” Sean said. “However, it really is a challenge for kids with autism and their families because they're losing so many opportunities for interaction that can't be reproduced at home.”

In addition to the experience of being a parent of a child with autism, Sean is the director of community program development for the Kansas Center for Autism Research and Training, or K-CART, a research center at the Life Span Institute. The center has been fielding questions about how to adjust as children’s access to opportunities is completely upended by stay-at-home orders, the closure of businesses, and converting school classrooms to online instruction. The center has created a list of COVID-19 resources for families.

Autism webinar logoWe reached out to Associate Professor Rene Jamison, a licensed psychologist for the Center for Child Health and Development in Pediatrics at the KU Medical Center and an investigator at K-CART, for tips for parents who are navigating these changes. She and other researchers will offer a webinar for families on April 10, “Managing the Coronavirus as an Individual with ASD or Caregiver.” She also provided the following guidance, which has been edited and condensed:

How can I help my child adjust to change?
It will be important for parents and families to prioritize what’s most important to keep up with. I know a lot of our families are really worried about the long days at home together, lack of structure and missing their educational opportunities. Some families are experiencing financial stress or a need for childcare. Priorities will be different for each family. 

Adjusting to these changes will be easier if you can identify tasks to accomplish in smaller chunks of the day, taking the to do list in stride. For example, when everyone is awake, you can establish that everyone will make their bed, brush their teeth and then cook breakfast. 

Identify new opportunities and the positive changes that result from sheltering at home. Try to spend more time together and connect with children. Focus on those basic needs.

How do I help my child maintain social skills during this time?
There is no doubt that kids with autism are not spending as much time engaged in social interaction or extracurricular activities. During this time, parents can model interaction and connection with their friends and family, incorporating their kids into this as well. That way you're all engaged together. 

For some, virtual classrooms or video calling friends can be overwhelming, so just circle back to prioritizing what the child gets the most out of or enjoys. Find out how other kids or teens their age are connecting in order to get ideas and create opportunities around interests or existing friends. 

How do I help my child establish a routine?
Parents and caregivers can identify priorities based on family and child needs. If possible, engage the child in creating a schedule and consider what will work best based on schedules of other family members as well. It doesn’t have to mirror the school day; academics or learning can be mixed in with time for connection and provide space for children to choose what they want to do. For example, this might look like writing and reading time in the mornings, then cooking lunch together and a walk outside.

It doesn’t need to be overly specific or scheduled to the minute, but should give enough structure so that children can see what's coming up that day.

How do I assist my child when preferred choices and activities are not available?
It’s frustrating for kids to not be able to do what they want right now. So while they may not be able to engage in preferred activities in the community, you can build scenarios at home that give them choices. Whether it’s setting up a pretend store with stuff from around the house or letting them choose what to eat for dinner some night, addressing and validating their frustration should be at the core of these experiences. 

Keeping kids engaged by asking them what they might need, or checking in on them throughout the day with affirmations or physical touch will ease this transition. If possible, create activities for children or get out materials or toys to use within certain settings or time of day. Small groupings of tasks and activities will help things move slowly. 

Most importantly, take things slowly and care for each other during this time. Daily living skills and leisure activities can be equally important when children might not be working on academic-driven skills. Parents and caregivers can look for opportunities that allow the family to learn together and to incorporate the child’s interests.

A recording of the webinar can be found here.

Written by Grant Heiman

Image of baggage at airport

 

Apprehension is expected before a traveler boards a flight, whether it’s anxiety about airline safety or worrying about a delayed flight. 

Yet for people who depend on wheelchairs to move through the world, the possibility of damage to their chairs poses the biggest stressor of them all. Wheelchairs aren’t just an object or item to be checked like a suitcase for a flight; they are an extension of the user and a vital part of their daily lives.

Once a user has boarded a plane, their wheelchair usually is loaded into the baggage area of the plane. The chairs may be disassembled or damaged in the process. Power chairs can be expensive; custom machines can cost upwards of $20,000. 

Dot Nary, assistant research professor at the Life Span Institute’s Research and Training Center on Independent Living (RTC), is among many people who have experienced the challenges of mishandled wheelchairs.

“Once we went to Washington D.C., and the joystick on a person’s power chair was just totally bent over,” Nary said. “The more severely disabled you are, the more you need a custom chair, so this person’s replacement chair didn’t fit her and she was basically confined to her hotel room the whole time.”

Nary has seen her own chair and those belonging to colleagues dismantled and loaded onto the plane piece by piece with no labels on the parts. Upon arrival at one destination, Nary carefully checked her chair and realized her colleague’s chair had been put together with Nary’s wheels.

“Wheelchair users will never have equal opportunity to participate in travel for work, recreation and other purposes if they have to risk their mobility due to airline negligence,” Nary said. 

U.S. Senator Tammy Duckworth (D-IL), whose own chairs have been damaged by airlines, spearheaded legislation that took effect in December 2018 that required airlines to track how many wheelchairs were damaged, lost or delayed. A veteran and double amputee, Duckworth understands the problems that wheelchair users face, said Jean Hall, director of the Institute for Health and Disability Policy Studies at the Life Span Institute. 

“She knows all too well the myriad problems with air travel,” Hall said. “If she hadn’t called attention to it, I doubt many people in power would really care.” 

The legislation led to a recent report from the U.S. Department of Transportation that highlighted just how nerve-racking flying can be for wheelchair users. Roughly 7,700 wheelchairs were mishandled from January to September in 2019, averaging out to 29 wheelchairs per day.

Ranita Wilks, an advisory board member at the RTC, said her brand-new manual chair was damaged when the airline deconstructed the chair for transport. The footrest, left wheel and main frame were all damaged. 

“My four-day trip to Washington, D.C., was spent on the phone with Global Repair Group trying to coordinate repairs to my chair,” she said. “While there, they sent a repair company to my hotel room which informed me they couldn’t repair the wheelchair.” The damage ultimately took three months to fix. 

Nary said such experiences pose an issue to equality in terms of travel and employment. Some people may opt to avoid airline travel altogether because of their concerns for their mobility. But without travel, an individual may miss out on networking, research, education or other opportunities, Nary said. For a population that experiences high unemployment – 65% percent of individuals with disabilities are unemployed – that is a critical issue for a person’s career, and their lifestyle.

“Air travel is necessary for people with disabilities to be able to work and play in the same ways that people without disabilities do,” Hall said. “Yet, existing policies to assure equal access to air travel are, as shown, largely ineffective.”

At the Research & Training Center on Independent Living, researchers work to enhance independent living initiatives for individuals with disabilities. For airline travel, the center developed a fact sheet for individuals to know their rights under the Air Carrier Access Act in case an issue arises.

“One important step in making change is empowering people with disabilities to know their rights and speak up when airlines do not meet the spirit and intent of the law.” Hall said. “We are also committed to giving a voice to people with disabilities through our research so that barriers like this one continue to get the attention they deserve.”

Story by Grant Heiman

Illustration by Elizabeth Newell

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