With Great Power

By LEND Trainee Monica Moy

I think that most of us, at some point in our lives, have heard the proverb “With great power

comes great responsibility.” Popularized by the Spider-Man comics, this quote’s main themes

have cropped up in legends, parables, and philosophical musings throughout history. From the

legend of the Sword of Damocles in 1st century BC to a decree made by the French National

Convention in 1793.

While this quote is most well-known for its use in Marvel’s Spider-Man comics, I have found it

increasingly relevant as I learn more about disability rights on a national and global scale. My

experiences in LEND over this past year have taught me the value in being willing to stand up

and take responsibility in advocating for the things you are passionate about. For the majority of

individuals in LEND, I’d hazard a guess and say that we are passionate about disability rights.

Going through the LEND program has vastly increased my knowledge base of disability, and to

reference another well-known quote, “knowledge is power.” This saying was coined by Sir

Francis Bacon in 1597 in his work, Meditationes Sacrae, and I believe that in today’s society, it

references the importance of knowledge in influencing decision making and policy

implementation.

On a global scale, America (and the global North as a whole) undoubtedly wields a great deal of

power and thus holds a great deal of responsibility when it comes to the production of disability

theories and the fight for disability rights. However, there is a vast imbalance between writings

about the experience of disability in the global North versus the global South. The North

produces the majority of ideas and knowledge within the field of disability studies and imposes

this knowledge on the South, creating a form of modern scholarly colonialism which fails to fully

take into account the experiences of the over 400 million disabled people living in the global

South (Meekosha, 2011). As an American citizen and an individual passionate about disability

rights, I believe that it is our responsibility to use the power and privilege of my position to help

contribute to the intellectual decolonization of the realm of disability studies, and I could

encourage anyone else passionate about disability rights to do the same! There is certainly

much work still to be done in striving for disability rights here in the U.S., but that does not

mean that we should not also strive for disability rights elsewhere in the world. Disability is a

global experience, but it is not universally understood, and as proponents of disability rights, I

believe that we have a moral responsibility to continue our advocacy by acknowledging the

legitimacy of the experiences of disability in the global South.

This is a topic I am incredibly passionate about, and I know that I have only barely scratched the

surface of it. If you are interested in engaging more with this topic, I highly recommend checking

out the article, “Decolonising disability: thinking and acting globally” by Helen Meekosha.

Meekosha, H. (2011). Decolonising disability: thinking and acting globally. Disability & Society,

26(6), 667-682. https://doi.org/10.1080/09687599.2011.602860

National Social Work Month

By: Stephanie Gallardo

March is Social Work Month. A month dedicated to bring awareness and celebrate the great profession of Social Work. The theme for Social Work Month 2024 is “Empowering Social Workers!”[1]

According to the National Association of Social Workers (NASW), the 2024 theme of Empowering Social Workers brings attention to need for social workers to be compensated adequately for the important work they contribute to our society [1]. Increased rates of homelessness, opioid use crisis, mental health crisis, poverty, humanitarian crises- Social Workers are key agents in supporting our most vulnerable populations [1]. Social workers are uniquely trained to address societal troubles and examine the human experience through an Ecological Systems Lens.

The Ecological Systems Theory suggests that an individual’s development is influenced by a series of interconnected environmental systems, ranging from immediate surroundings (e.g., Family) to broad societal structures (e.g., Culture). These systems include the microsystem, mesosystem, exosystem, macrosystem, and chronosystem, each representing different levels of environmental influences on an individual’s growth and behavior. [2]

Understanding the many facets of the human experience- social workers enter the profession because they truly want to help others. They go through years of education, training, and supervision so they can do the delicate but important work of meeting people where they are and helping them achieve their goals [1].

I too entered the social work profession to make a difference in people’s lives. I find value in helping individuals live their most meaningful life. The social work profession has given me the flexibility to be of service to others in various settings (e.g., community mental health clinics, private practice, residential treatment centers, hospitals, universities, and social service agencies) experiences that demonstrate that all human beings benefit of support regardless of socioeconomic status.

Often social workers, myself included are busy filling everyone else’s cup when they come to realize that they have not sufficiently filled their own cup, leading to exhaustion and burnout. The social work profession is emotionally, mentally, and physically intense. Daily exposure to the effects of trauma, poverty, and social or racial inequalities; social workers spend a lot of time and energy thinking about, attuning to, and caring for their clients’ needs.

High caseloads, high client acuity, and low wages are well-known causes of social worker burnout. A recent study found that, following the start of COVID-19, 26.21% of social workers met the diagnostic criteria for PTSD, 16.22% reported severe grief, 63.71% reported burnout, and 49.59% reported secondary trauma [3]. These statistics of burnout and grief, are a similar representation for our providers in the healthcare field. Serving as a medical social worker during and post-covid, most of my healthcare colleagues felt that heaviness on their shoulders.

As advocates, and professionals who are devoted in serving individuals and communities that are most vulnerable; it is equally important for the community to support legislation and initiatives that empower and support the social work profession. This includes the Improving Access to Mental Health Act, student loan debt relief, and social work safety legislation [1].

We are all human. Let us all, Empower one another.

1.     Theme and Rationale for Social Work Month 2024. (1 C.E., March). National Association of Social Workers. Retrieved March 6, 2024, from https://www.socialworkers.org/News/Social-Work-Month/Theme-and-Rationale-2024

2.     Bronfenbrenner, U., & Ceci, S. J. (1994). Nature-nurture reconceptualised: A bio-ecological model. Psychological Review, 10 (4), 568–586.

3.     Holmes, M. R., et al. (2021). Impact of COVID-19 Pandemic on Posttraumatic Stress, Grief, Burnout, and Secondary Trauma of Social Workers in the United States. Clinical Social Work Journal, 1–10. Advance online publication. https://doi.org/10.1007/s10615-021-00795-y

Conflating ‘Healthy’ with ‘Normal’: Reflections on the IVF Clinic from a Disability Ally and Egg Donor

By: Angie Murthy

Disclaimer: To me, this post affords me a space for reflection, to make readable the half-thoughts that swarmed me during my screening visit for a disclosed egg donation, giving words to the dissonance I felt and do feel between my roles as ally and donor. It is not my way of offering my stance for or against anything.

In the waiting room of a reproductive wellness clinic, my first thought was “wow, these clinics are really as nice-with-a-touch-of-futuristic as people say!” Struggling to calm my own nerves, I started to notice my company. At the front desk sat two busy receptionists, one with her ear to a phone, the other interacting with a beaming couple. Across from me, a pair of people rummaged through forms. Their body language made me think they’d been here before but were still not much more comfortable here than I was.

I was at my first, much-anticipated, screening visit to start the process of donating my eggs. The journey to get here had taken months: it started with a targeted Instagram ad and involved submitting a comprehensive profile to a company that seemed like something from my dreams. It is women-founded, with the express goal of granting more autonomy to donors like me— half of the eggs retrieved are frozen free for future use by donors— and the humans born from the exchange. They are leading a movement toward ‘disclosed’ donations, in which donors can meet the intended parents, weigh in on to whom we’d want to donate, and even legally keep open a channel of communication between the intended parents, their child, and me. I was stoked.

My initial excitement grew into immense gratitude when I met the intended parents who chose me. We laughed about our mutual nerves surrounding the meeting, shared the stories from our past that built us and visions for our future. I am deeply honored to have the chance to contribute to the actualization of their future, and that through them I am gifted security in the range of possibilities of mine.

At the screening visit, agreeing to certain stipulations of donation — from what substances I am permitted to introduce into my body to the forms of intimacy I am to avoid until after retrieval — became easier when I paused and thought of how, on my current path to becoming a physician, I have many times already made ‘sacrifices’ for individuals more unknown to me than the two strangers who’d invited me into their story.

My internal grappling began when the conversation turned to genetic screening. In line with the current guidelines set forth by the American Society for Reproductive Medicine, I was to undergo genetic carrier screening that would investigate if I was the carrier for certain genetic conditions, including sickle cell anemia and cystic fibrosis. If the carrier screen is negative, then we would proceed. Around 5 days after the embryos are made, there would be a second round of screening that assessed for chromosomal differences like Down’s Syndrome.  

That’s all of the information I was given directly from my clinic team, but as a medical student who had just spent the past 3 months studying for a major board exam, my mind immediately began to list the possible conditions that they could identify on a blood screen.

As someone who is passionate about building a world that integrates and empowers Disabled people, I started to wonder: who are the people I know, care about, work with who live with a condition that would mark an egg or embryo as ‘ineligible’? What does the fact that this screening is an expected, almost universal part of the IVF process reveal about how we as a society value Disabled lives now? How we imagine disability as a component of our future? Is this a means of attempting to control an inevitably uncertain future, and if so, to protect what? To prevent whom?

I am not the first person to observe, speak on, and bear questions from the dissonance between reproductive technologies and disability.1-7 This is also not the first time I’ve challenged the preservation of a universal “normal” in clinical practice.8 I am still figuring how this dissonance will sit in my future clinical practice as an OB/GYN, when people along the spectrum of their parenting journeys are confiding in me about their fears and goals and entrusting me to help navigate them.

This opportunity has brought me closer than ever to being a willing agent in this process, both as a patient and as a future physician. To be honest, I’m not sure how to feel about it.

Things I am sure about: I remain fiercely protective of a pregnant person’s right to autonomy in every step of their pregnancy. I am in full support of the understanding that disability is a natural component of human variation, that society must urgently embrace that understanding and build communities that reflect it. I’m not ready to give up on the embrace of multiple normals. I am prepared to listen and support each person before me.

To be (evermore) continued…

The Importance of Entrepreneurship for People with Disabilities

By: Asianna Griffin, Occupational Therapy LEND Trainee

Image Description: Clip art picture of a yellow lightbulb with twelve figures standing around it.

As a LEND Trainee, I have been privileged enough to intern with the Entrepreneurship for Youth with Disabilities (EYD) project. EYD supports youth with disabilities from low-income communities with the goal of successful entrepreneurship and self-employment. This experience has made me immensely interested in entrepreneurship as a viable option for people with disabilities. Barriers to entrepreneurship & self-employment include lack of formal support from Vocational Rehabilitation counselors, lack of money and infrastructure to set up business, and discrimination.

People with disabilities deserve much more. They deserve equal opportunities, a stable income and living, and the right to explore their interests. Research shows that economic independence and entrepreneurship have increased people with disabilities’ autonomy. Being able to create your own working environment and sell a product or service that you love is empowering. As allies to the disability community, we should stand in agreement and fund projects like EYD that support and uplift entrepreneurship.  

References:

https://eyd.ahs.uic.edu/about-eyd/

Ortiz García, P., & Olaz Capitán, Á. J. (2021). Entrepreneurship for People With Disabilities: From Skills to Social Value. Frontiers in psychology, 12, 699833. https://doi.org/10.3389/fpsyg.2021.699833

Image Source:

https://depositphotos.com/vectors/entrepreneurship.html

TikTok Made Me Do It

By Eleanor Powell

Content warning: natural disasters, active shooter drills, armed conflict

How It Started

Like many millennials, I got into TikTok during the pandemic. Although I first started watching the videos for fun, I soon found myself immersed in advocacy and equity sides of TikTok. Before I knew it, I was primarily watching either videos of cute dogs or of people sharing lived experiences and educating others. Due to my interest in disability rights, I was quickly drawn into disabilitytok.

About a year ago, I was watching a disability self-advocate talk about what happens to disabled students during emergencies at school. If there is a fire and you can’t take the elevator, what do you do? Sure, there is an “Area of Refuge” where firefighters should come to rescue you, but would you be willing to bet your life on it? What about if there is a lockdown and all the students are told to hide under their desks or in a closet, but you use a wheelchair or are overstimulated by noise or in crowded areas? Is there somewhere else you could hide away from your classmates and windows? Maybe.

This got me started on some research.

How It’s Going

Children with disabilities are especially vulnerable during emergencies, disasters, and wars, and even to climate change. You can read more about that in the links I’ve provided below. In December I heard a story on NPR’s Where We Live, a local show on Connecticut’s WNPR. It was a rebroadcast episode called The Trauma of Witnessing War, Near and Far (you will need to scroll down to November 10, 2023, or search for it wherever you get your podcasts). They were interviewing President and Founder of the Palestine Children's Relief Fund, Dr. Taline Andonian, who was speaking about the disproportionate effect the war in Gaza was having on children with complex healthcare needs. He also mentioned that thousands of children with disabilities had died (as of early November) due to a lack of access to medical care because of the war, but these children were not counted in the death totals reported as war casualties. I can only imagine that that number has increased, and it does not account for adults with disabilities.

What we call wars or humanitarian crises can quickly become tragedies for people with disabilities, especially women and children. When civilians are told to evacuate an area for safety, people with complex medical needs not only take longer to evacuate to ensure they have the support and care they need, but they may even evacuate to a hospital. But what if, as is the case in Gaza right now, there are no hospitals left?

This issue is not unique to the war in Gaza. Before the war in Ukraine, around 45,000 children (about twice the seating capacity of Madison Square Garden) with disabilities were living in institutions. Tens of thousands of these children were displaced, many without the support they require, or even left behind when staff evacuated with their families. You can read more about the Ukraine war response for children with disabilities here.

In addition to people already living with disabilities in the affected area, wars are mass disabling events. We saw that in the US after WWII when medical care had improved enough to save wounded soldiers and send them home. But what happens to all the people who are injured during a war and then remain in an area that has been destroyed? Are the supports and medical care needed available? Is transportation accessible? Do these individuals have family, friends, or even paid workers to help them adjust to their new life?

How I Leave You

I am not currently living in an area at war or that is experiencing a humanitarian crisis. If my apartment building catches on fire, I can take the stairs to get to safety. If my neighborhood were unexpectedly destroyed by a natural disaster and I did not have regular access to a hospital, I would still have a good chance of surviving. I am not Ukrainian, Israeli, Palestinian, or a WWII vet. To understand these issues, we must listen to those experiencing them.

The CDC has Disability and Health Preparedness resources available to communities to make sure that emergency preparedness plans are inclusive of disability. Ask leaders in your school, community, and local government if they have considered community members with disabilities in emergency plans. I have shared some links below to help you learn more about how people with disabilities are disproportionately affected by disasters, displacement, and war, but you should also search out people with lived experience.

I am not an expert, and I have barely scratched the surface of this issue. I also understand that emergencies and crises are complex and difficult to manage. People will be negatively affected, hurt, or killed during these events despite the best preparation. But are we okay with that burden falling more heavily on people with disabilities? I know I’m not.

Links for more information:

How School Shooting Responses Leave Out Disabled Students

Disability in a Time of Climate Disaster

The Impacts of Extreme Weather Events on People with Disabilities

Palestinians with Disabilities Face Immense Hardship in Gaza

Why Palestinian Liberation is Disability Justice

Gaza: Israeli Attacks, Blockade Devastating for People with Disabilities

Gaza Crisis: Catastrophic Impacts on Persons with Disabilities

Follow Imani Barbarin, author, disability activist, and communications professional on TikTok @Crutches_and_Spice

Follow @GazaPressHeroes for more information about what is happening to displaced people in Gaza

The Importance of Mental Health for People with Intellectual and Developmental Disabilities

By: Grace Kendzior, LEND Social Work Trainee 

Image Description: Clip art picture of a brain and the words “Mental Health Is Important” 

I am currently completing my Master of Social Work degree at the Jane Addams College of Social Work at the University of Illinois at Chicago. As a part of my training, I am interning on a research study called the B.E.S.T. Study. The B.E.S.T. Study is testing a program to determine if a care coordination program that helps youth with intellectual and developmental disabilities (IDD) with mood and stress is better than a care coordination program that directs youth with IDD to outside providers to help with mood and stress. 

My internship experience has led me to realize just how under-studied and underserved individuals with IDD are in the mental health field. People with IDD experience the same types of mental health disorders as the general population. These include bipolar disorder, major depressive disorder, post-traumatic stress disorder, and generalized anxiety disorder to name a few. Individuals with IDD are also more likely to experience traumatic events like abuse and neglect compared to individuals without IDD. However, most mental health professionals receive little to no training on working with this population. 

People with IDD deserve the same access to mental health care that the rest of the population is afforded. Future advocacy in the mental health field should be directed toward training practitioners on working with individuals with IDD to make mental health care more accessible to the IDD population. 

References: 

Mental Health Wellness for people with intellectual and developmental disabilities. Texas Health and Human Services. (n.d.). https://www.hhs.texas.gov/about/process-improvement/improving-services-texans/behavioral-health-services/mental-health-wellness-people-intellectual-developmental-disabilities#:~:text=Recognizing%20the%20behavioral%20health%20needs,will%20support%20resiliency%20and%20recovery.  

Image Source: 

https://www.charities.org/news/may-mental-health-month-raise-awareness-erase-stigma-and-get-support  

Autism- Elementary My Dear

By Antonia Berenbaum

I am an Autistic person, and my name is Antonia Berenbaum. I intentionally put the word autistic first as an introduction before my name because I am proud to be autistic. Autism is part of my identity. Autistic people and the neurodivergent community do NOT need to be pitied. We do NOT need to be saved. We are just as good as everyone else. We deserve to be treated with dignity and respect.

Autism gives me extraordinary strengths (e.g., my ability to have unique attention to detail) that are unrivaled to my neurotypical peers. Unlike many of my neurotypical counterparts, I consider myself to be genuinely neurodiversity affirming.

Neurodiversity affirming means that the support team makes an individual support plan for that neurodivergent individual. Notice how I used the term “support team” and not the typical phrase “treatment team” (language used in the traditional medical model).

So what does this look like in practice?

Using the traditional medical (categorical) model, if a student is diagnosed with Attention Deficit Disorder — Combined Type [314.01 (F90.2)], then do what is best for that child. If that means being pulled out and getting individualized 1:1 tutoring with a special education teacher, do that. If that means, getting pulled out and placed in a designated special education classroom with less students, do that. If that means keeping the child in the general education classroom but finding strategies to help the child learn to focus and lessen disruptive behaviors, do that. Do whatever you need to do to support that child. Do whatever you need to do to support the family. Do whatever you need to do to support other key players on the support team. Again, notice how I am using the word “support” in place of “treatment.”

I truly believe that autism is a gift that should not only be accepted but cherished and celebrated. I acknowledge that there are many Autistic humans and other neurodivergent persons who experience difficult daily challenges. Autism can simultaneously be both a disability and a gift.

Autism never needs to be cured. Instead let’s teach adaptive life skills and change the environment to fit the needs of the autistic person.

What does disability look like across the pond? an outsider/insider view.

By: Abubakr Elbashier, Pediatrics/Medicine Trainee

We have come a long way over the past few centuries, citizens of this earth have opportunities today that were once unimaginable. If you can afford it, you can live in a great neighborhood, go to the best schools, and get the best health care… “if”. Inequity and inequality exist at the local, regional, national, and global scale. We often ask what life would be like if we were born and bred in a different part of town, but what if you were born and bred in a different part of the world? What if you were born in Africa?

Fig 1: Map of countries by GDP (nominal) per capita in 2023. Notice Africa by far has the poorest countries in comparison.

https://en.m.wikipedia.org/wiki/File:Map_of_countries_by_GDP_(nominal)_per_capita_in_2023.svg

I come from Sudan, a country at war with itself. Seven to eight million people have been displaced since April 2023. Schools and universities are closed, doctors and nurses are being killed as they serve in hospitals that are out of basic medications. Up to 20 per cent of Sudan's estimated population of 40 million are believed to suffer from some type of disability, and their needs are not being met now more than ever. Our neighbors Ethiopia are seen as pioneers in the region for creating sidewalks that aide people with visual impairments in the capital (Addis Ababa), but as one person put it, “I always seek for help as I constantly fear that I would die and get injured while crossing roads and walking on the street. Unfortunately, the city is built without considering the needs of disabled people like me”. South Africa understood that some tourists have specific needs, in response they now have hotels, sightseeing spots, airports, and restaurants that are suitable for wheelchairs. Table Mountain, for example, has wheelchair access and a mile of walkways at the summit. Some beaches even have 'beach wheelchairs' that can be pushed over the sand and into the sea. But what about the South African’s that live outside the tourist hotspots?

Fig 2: A sudanese physiotherapist talks with a patient about his prosthesis. Open the link for more information and pictures. This picture was taken before the war but shows a fractured health care system, especially for people who are disabled.

https://www.icrc.org/en/document/orthopedic-sudan-disability-conflict-rehab-prosthetic-orthotics

Fig 3: This photograph shows people walking at the crossroads of the busy center of Ethiopia’s capital, where international events take place nearby. Notice on the bottom right corner of the picture, the yellow blind guide tactile paving. You will not find blind guide tactile paving outside this central part of the city. Some areas even lack pavements.

https://thecityfix.com/blog/transforming-bole-road-in-addis-ababa-to-improve-safety-and-accessibility/

Fig 4: The private game reserve in Klaserie National Park, South Africa — became wheelchair accessible. The picture shows a tour guide helping a woman before going on a safari. This reserve has a portable pool hoist, (waiting beside the infinity pool), shower seats, commode chairs, grab rails, and an adjustable bed in the hotel. https://www.cntraveler.com/story/wheelchair-accessible-safari-south-africa

On a more personal level, my aunt has disabilities. She is hearing impaired, has severe scoliosis, and intellectual disability. Although I do feel like she lived a happy life, I often think about her not being given equal opportunities. She did not receive an education and lived for over 60 years as my grandmother’s helper. I wonder how different her life would have been if...

I say that to say, although we all feel like more can be done in the United States to people with disabilities, it’s worthwhile to know what is happening in other countries. I wish I had a magic wand, and grant every child that comes to my clinic the services that they need, from ABA to an IEP that meets all the child’s needs. I also wish that across the pond people with disabilities receive an education, accommodations, healthcare, equal opportunities, and most importantly, to be treated with dignity and respect.

It’s Time to Integrate More Disability Studies in Physical Therapy Education!

By Hanna Shekari

Currently in the world of Physical Therapy (PT), there are discussions about incorporating principles from Disability Studies (DS) into PT education. DS focuses on the social, cultural, and political aspects of disability, aiming to reshape perspectives on disability. However, with regards to PT as a discipline, some may argue that is still in the process of shifting from focusing on the medical model rather than the social model of defining disabilities. It was reported in 2016 by the World Confederation for Physical Therapy that there was a diminished awareness of barriers faced by people with disabilities (PWD) within physical therapy, prevalent in both educational and practice settings. 3

As DS emphasize the social model of disability rather than the medical model, integrating it into the education of physical therapy students can encourage them to gain a more holistic understanding of the lived experiences of individuals with disabilities. More importantly, in the long run, this can further encourage PT students to be advocates once they graduate since they would understand the societal barriers and systemic issues that individuals with disabilities face. They can play a vital role in advocating for accessible healthcare services, inclusive environments, and policies that support the rights and autonomy of PWD. Overall, they can contribute to creating a more inclusive and equitable society.

As a PT student at UIC, I’m incredibly grateful to be a part of the IL LEND program, as it has given me the opportunity to delve into a bit of DS and other imperative topics. Through community engagement and leadership development, the program has helped me cultivate a holistic understanding of disability, preparing me to be an effective advocate and leader in promoting inclusivity in healthcare. It has made me, professionally, become more confident and comfortable in treating all sorts of different types of patients and advocate for them, whether they have a disability or not. I sincerely hope other physical therapy programs provide an opportunity like this to their students.

1.     Feldner H, Lent K D. Approaching Disability Studies in Physical Therapist Education: Tensions, successes, and Future Directions. Journal of Teaching Disability Studies. https://jtds.commons.gc.cuny.edu/approaching-disability-studies-in-physical-therapist-education-tensions-successes-and-future-directions/. Accessed January 4, 2024.

2.     Herrman D. “Unsticking” Physical Therapy Education with Disability Studies: Exploring Tensions and Opportunities. ahs.uic.edu. Published October 21, 2021. Accessed January 5, 2024. https://ahs.uic.edu/inside-ahs/events/unsticking-physical-therapy-education-with-disability-studies-exploring-tensions-and-opportunities/

3.     Sharp A, Herrman D. Disability and physical therapy: a complicated relationship, an uncertain path forward. Physical Therapy. 2021;101(7). doi:10.1093/ptj/pzab085

Going Over the Cliff as a Family

By Aubrey Thornton, Social Work Trainee and sibling

It is 2012 and I am at my brother’s last IEP (Individualized Education Plan) meeting. We are sitting with staff and administrators who know my brother and like my brother. We are discussing his most recent evaluation and the services my brother has received. My brother is at the table, my family is at the table, I am at the table. As a sibling, I was not always included in these meetings, but now, I am an adult and in school for social work with a goal of working in schools and students with disabilities. I wanted to make sure that my brother was provided with all of the things he needed to be successful.

We discussed my brother’s progress. He had a job that he was connected to via a friend of the family, but maintained all on his own. He was going to college (the program his high school transition program partnered with at the community college). He, through his amazing resilience, determination, and amazing personality, created a support system around himself. He had friends, family, teachers, community members all willing to work with him and help him if he ever needed it. By all standards of his special education team, my brother is a success story. What could be better? Maybe a path towards a career not just a “job?” He was competitively employed, so we should just be thankful, right? Maybe a college program related to his career? I started to sense that my brother’s career goals were being decided for him. The world seemed to want him to work in the food service/sanitation industry. This was acceptable by his team, and my brother, who is an incredibly hard worker, took on every challenge and worked to get the most out of all of his experiences. But was this what he really wanted out of life? No. Not according to his IEP where he identified that he wanted to work in the film industry.

Image Description: Photo of a cliff with green grass overlooking the Atlantic Ocean.

But like I said at the beginning, this was my brother’s last IEP meeting. What are the options for his next steps? We were staring at the cliff into adult services. We got the same options as everyone else: DRS (Department of Rehabilitation Services) that would help my brother go to college, but he would need to complete his degree in 4 years with arguably less support than he received in high school, the PUNS (Prioritization for Urgency of Need for Services) list to see if he qualifies for adult services. I left the meeting feeling so incredibly proud of my brother and what he accomplished, but also dread of not knowing what is next.

We kept moving. My brother’s career dream changed. After all, as Stephen Colbert stated, “If we’d all stuck with our first dream, the world would be overrun with cowboys and princesses.” He completed a degree in clinical massage therapy and is working part time in his preferred field while maintaining employment at another job so that he can work towards his financial goals. He is married to a wonderful person. They have bought a home. We are so proud of him and his accomplishments. These are celebrated moments in anyone’s life. Unfortunately, there has been minimal support for my brother who is also part of the disability community. My family, his wife and in-laws support him in every way we can as we would for any loved one, but shouldn’t he be entitled to accommodations and supports? Why should his support end after high school? Why did he qualify for services in high school but suddenly he becomes and adult and it feels impossible to get the support that helps him realize his dreams?

FLYING HIGH WITH PEER SUPPORT and YOUR “FLOCK OF FOLKS”!

By Sandra Heidt, Parent Disability Advocate and ILLINOIS LEND Family Trainee

My name is Sandra,  a 63-year-old single parent caregiver for a 21-year-old Autistic son, living with IDD and speech delay and this is one of my stories.

One day after a long, hectic week of school, work and providing for my son’s needs, I seized the opportunity to take one hour for myself which led to a walk in the forest preserve. Believe me when I say that day I was overwhelmed, mentally exhausted, and nothing could have been better than breathing the fresh air on a brisk, sunny day.

As I walked and looked at the cloudless sky while sipping my Starbucks, Grande, two extra pumps of chai tea with almond milk and whipped cream, I noticed a flock of birds flying around in formation. At one point, the birds formed a triangular pattern while flapping their wings and gliding in unison. Watching in amazement, I felt the need to stop walking and immediately sat on a nearby bench to gaze at this picture of beauty.

In awe, I began to wonder why do birds fly in groups? Why do they fly in formation? While sitting, my curiosity led to a google search which revealed that birds fly in formation and glide to reduce energy, show support, and protect each other. Also, flying in groups makes it easy to keep track of every bird because they help each other, work together, assist with communication, coordination and share common goals like safety, and sense of family. Right then I thought by comparison, this concept was quite like a peer support group which I had just learned about during class.

Digging deep within my thoughts, since my son was diagnosed with Autism, I always felt alone on this caregiving journey and, not for sake of trying, my immediate family was unable to provide support so, I championed it alone. Thinking a little further, during this training class; specifically, on the topic of “Person Centered Planning”, a question occurred where I wondered, who could I find to support me to plan and build my son’s quality lifestyle as it pertained to individuality, independence, choice, dignity, respect, and rights, PCP’s core values?

As long as I can remember, from Individual Education Plans, “IEPs” to medical and therapeutic appointments, supporting behavioral and/or mental health needs, and creating opportunities for social engagements, I did not feel like I had any support until I observed the flock of birds and understood their purpose. Often, I was in the habit of saying things such as, “I prefer to fly alone”, “ I can do this by myself” “I don’t need anybody” but watching those birds reminded me that as a caregiver in this disability space, everyone needs support. No one should glide by themselves because, if you do, you will find yourself constantly flapping your wings, trying to carry your own weight and that of the person who depends on you to get them from one place to another. Furthermore, complex systems and attitudinal barriers have made it arduous to get the support you need and without a network, it becomes harder and harder to fly. Consequently, just like the bird, you are forced to rest from illness, fatigue, stress, or depression. Instead of flying with a “flock of folks,” you find yourself falling deeper and deeper into “flying solo.”

I found myself shedding happy tears upon discovering that I had a ” flock of folks” all along, both individually and organizationally.

At that moment, I immediately thought of three people that have always been there for me. First there’s Kim, my mentor and friend who was always available to share resources, and information, guide me through my son’s IEP’s, transition, and support my journey toward disability advocacy. Then, there’s Tiffany, another friend who can make you laugh louder, smile bigger and live better when you are feeling at your worst; she brings me such joy. And finally, Jill, my untraditional sister, who is my rock that gives my son and I unconditional acceptance and love while guiding me to get further and glide more effortlessly.

This walk was exhilarating and met its purpose. Finding a peer support can empower you to; 1) build connections, 2) help each other understand your role as a caregiver, 3) re-define help as a learning and growing process and, 4) help you move toward what you want rather than what you cannot have while caring for a person with a disability. Having that “flock of folks” can rejuvenate your soul while giving you strength, balance, and stability.

 If you do not already have peer support, I challenge you to find your “flock of folks” so just like me, you too can begin to soar. Connect with other parents through your networks, your church; ask one of the professionals to recommend one for you. If you live in Illinois, reach out to organizations like Chicagoland Autism Connection (CAC), Access Living, The Arc of Illinois, Family Support Network or Supporting Illinois Brothers and Sisters for siblings of disabled persons. They too can provide the educational, emotional, and social support necessary for you to fly. Most importantly you will be encouraged and empowered to practice self-care and manage your own health care needs for you to continue your journey caring for a person with a disability.

Until next time….”there is no exercise better for the heart than reaching down and lifting people up”. I hope my story lifts you too.

Are We Prepared to Have a More Diverse Population in Our Educational System?: The Journey of Korean Families to America for Special Education

By Casey Kim, Special Education Teacher, UIUC Doctoral student and LEND Trainee 

Korean society has long held a deep respect for the pursuit of education, serving as a cornerstone of its reputation as an educational powerhouse. However, when it comes to special education, opinions in Korea are divided. In a culture where societal judgment (Si-sun in Korean) is significant, having a child with disabilities was once viewed as a familial 'shame.' This mindset is changing, with parents now investing heavily in supporting their children with disabilities. For instance, ABA therapy, which is not covered by medical insurance in Korea, can cost parents $80-$100 per 40-minute session, in addition to the expenses for speech therapy, occupational therapy, and physical therapy.

Many Korean parents are now turning their radar towards America, desperately seeking a new dream: high-quality, affordable special education for their children with disabilities.

The Move to America

The migration of Korean families to America, particularly those with children with disabilities, is a story of resilience and hope. They seek a more inclusive and supportive educational system, starkly contrasting what many find in their home country.

Challenges Faced by Korean Immigrant Parents

Despite the advantages of the U.S. system, Korean immigrant parents encounter numerous barriers, including language differences, cultural disparities, and a lack of sufficient information, leading to frustration and a sense of marginalization. A study focusing on Korean mothers raising children with disabilities in the U.S. emphasized their resilience and the need for cultural sensitivity in providing support (Lee et al., 2023).

The Way Forward

Bridging the gap between Korean immigrant families and the U.S. special education system requires several measures. Qualified interpreter services and systemic, sustained support are crucial, as is a deep understanding of cultural differences by educators and professionals.

Conclusion

The journey of Korean families to America in search of better educational opportunities for their children with disabilities demonstrates their dedication and the universal desire for inclusive, high-quality education. Addressing the challenges these families face is a step towards a more equitable and supportive educational environment for all.

For more stories of immigrant families, read here: 

• Cummings, K. P., & Hardin, B. J. (2017). Navigating disability and related services: Stories of immigrant families. Early Child Development and Care, 187(1), 115-127.

• Kim, J. (2013). Unheard Voices: Korean Immigrant Mothers' Experiences with the United States Special Education System. ProQuest LLC.

• Kim, J., & Kim, S. (2017). Positioning of Korean immigrant mothers of children with disabilities. International Journal of Multicultural Education, 19(3), 41-64.

• Lee, J., Kim, C., Yoon, C., & Chung, M. (2023). Exploring culture and challenging behaviors: Voices from Korean caregivers of young children with autism. Education and Treatment of Children.

• Yan, M. C., Kim, S., Kang, H. J., & Wilkerson, K. L. (2017). Perceptions of disability and special education among East Asian parents: US immigrants and non-immigrants. Journal of International Special Needs Education, 20(1), 41-55.

Healthcare from a Disability Studies Perspective

Abby Caughman

Healthcare is a human right. I know that is a controversial statement and one that holds a lot of gravity in our current political climate. However, what is often missing from the healthcare conversation are two things: (1) an understanding of the Medicaid and Medicare system available to individuals who can’t get employer-based insurance and (2) a personal aspect of what it is really like to rely on state/federal insurance. I am going to use the next few paragraphs to address both tenants and hopefully convince you of this truth: healthcare is a human right.

I was diagnosed with a chronic blood cancer in April 2022. It is a blood cancer that is most common in 60-year-old men. I am a 24-year-old woman. I am lucky enough to be on my parent’s health insurance until I am 26. I am terrified of what is to come.

When I was first diagnosed in South Carolina, my body did not respond the way it was supposed to. My oncologist told me that I was “outside of South Carolina’s level of care.” I had to seek medical care elsewhere, out of state. I went to the Mayo Clinic in Rochester, Minnesota.

The doctors in Minnesota saved my life. They came up with a treatment plan and I continue to follow up with my Mayo Clinic oncologist virtually every 3 months. He is the only person I trust with my cancer care- with my life.

I have since moved to Chicago, IL. I am assembling a wonderful group of doctors here that work side-by-side with my Mayo Clinic team. They both help me administer my weekly chemotherapy- medication alone that costs $70k/year. Medication that I will need to take for the rest of my life.

I will be terminated from my parent’s health insurance when I turn 26. I cannot work while fighting cancer- not when I am permanently disabled. I will have to turn to Medicaid to get health insurance. However, here is what many don’t know about Medicaid:

·      With Medicaid, healthcare coverage does not cross state lines (What Is the Difference, 2023). IL Medicaid can only be used in Illinois unless for a medical emergency. I won’t be able to use Medicaid at the Mayo Clinic in Minnesota because that is “routine” even if it is lifesaving. Medicare does work nationally, but the qualifications are much stricter. Some people qualify through end stage renal disease or ALS, but most often you need work credits to qualify- something that many disabled individuals do not have (What Is the Difference, 2023).

·      One in four providers in Illinois do not accept Medicaid (Hest, 2022). Which of my providers will I not be able to see? With Medicaid, individuals often do not get to choose their healthcare provider, Medicaid decides it for them. Further, the reimbursement rate is much lower for Medicaid compared to Medicare or private insurance which deters healthcare systems from accepting patients (Holgash & Heberlein, 2019). Medicare paints a different picture- only 1 in 100 doctors in IL do not accept Medicare, thus allowing patients a choice in their healthcare providers (Ochieng & Clerveau, 2023).

·      Each state gets to decide Medicaid eligibility (What Is the Difference, 2023). If I am eligible in IL, that doesn’t mean I am eligible in any other state. When someone moves to a new state, they need to re-apply for that state’s Medicaid- qualifying in IL doesn’t guarantee qualifying in IN. Can you risk moving across state lines and losing health insurance?

Instead of worrying about my health, I am worried about insurance. Instead of worrying about my cancer care, I am worried about insurance. Instead of learning how to live, I am worrying about insurance.

My story is not unique. There are millions of people in the United States who are in the same situation as me- forced to go to only a handful of doctors who may or may not be qualified, cannot leave the state they are in, drip in fear of losing coverage. Further, even the process of applying for Medicaid or SSI is complicated, fear inducing, and inherently confusing.

I didn’t choose cancer. My friend didn’t choose autism, even though we do celebrate it. None of us choose disability- why should we be cut off from equal access to healthcare because of the bodies we are in? I deserve access to equitable, quality, choice-inducing healthcare even if I cannot work full time. So do my friends. So do the millions of people that I do not know. So do you.

Medicaid is a broken system. It traps people into doctors they did not get to choose and prevents them from seeking out healthcare professionals that could be lifesaving. Where would I be without the Mayo Clinic? I would likely be dead.

My life matters. Every life matters, and with this essence of value, comes the need for adequate healthcare- Medicare, not Medicaid. Healthcare is a human right. I hope you believe me.

For more stories like mine, read here:

-       https://thearc.org/blog/using-medicaid-is-complicated-that-hurts-people-with-disabilities/

-       https://www.npr.org/sections/health-shots/2021/04/05/984435809/families-with-sick-kids-on-medicaid-seek-easier-access-to-out-of-state-hospitals

Why is it important for Inclusion?

By Bridget Brown, Self-Advocate Trainee

The United States just celebrated the 40th anniversary of the Rehabilitation Act. I watched a two-part series about the Act and I learned more information about the disability rights movement. It was so interesting! A lot of the original advocates who were at Crip Camp talked about their advocacy journey.  

The Rehabilitation Act of 1973 is a federal law prohibiting discrimination against of people with disabilities by federal agencies, federal contractors, or programs receiving federal funds. It also provided grants to states for vocational rehabilitation services, supported employment, independent living, and client assistance.1 Section 504 of the Rehabilitation Act is about civil rights and equal access. It created and extended civil rights to people with disabilities, provided opportunities for children and adults with disabilities in education, employment, and other settings with accommodations.

This paved the way for the 1975 PL 94-142 – The Education for All Handicapped Children Act (IDEA). 2 Legislation that followed included the ADA 1990, The Olmstead Decision, and the Ligas Consent Decree3 just to name a few. The Rehabilitation Act is 40 years old, and I am a person with a disability called Down Syndrome who is 37 years old. I am a part of this historic journey, every part of this impacted my life.

I was born 11 years after the PL 9412 (IDEA) that said all children should be educated with a free and appropriate Public Education (FAPE) in the LEAST RESTRICTIVE ENVIRONMENT (LRE). That law changed my whole life! When my mom’s cousin Maire was born with Down Syndrome in 1962. She went directly to a state institution from the hospital and lived there for her whole life. No family members ever met her. That is the true story of many people with Down Syndrome not long before I was born.

However, when I was born, and I went home to live in my community, the Law changed that for me and others. Because of the law, my family was able to advocate for me to be the first person included in my school, and one of the first in Illinois. If they did not advocate for me and if they did not have the LRE (Least Restrictive Environment) law behind them, I would have been in a completely self-contained segregated classroom. I possibly be in a different school or district; I would have had no access to the general curriculum and school activities. I went on to be one of the first fully included student to graduate from High School .and I have lived a full inclusive life. I am terrified when I think about what my life would have been like if I wasn’t included, if

I was born 11 years earlier. The Olmstead decision clarified LRE even more when it said that people with disabilities should be able to live and be educated in the most integrated setting. 

Most people I know with disabilities did not have an inclusive education, like I have, even when they had the LRE law to support them. Many people with disabilities are under educated and under employed. Illinois still has state institutions (more than almost every state in the country) where people with disabilities live in the most segregated and restrictive environment possible.  

When I was 18, students with disabilities could not even walk across the stage at their graduation. Because they would lose their opportunity to receive transition services. A friend of mine with Down Syndrome who was included just like me had a big advocacy campaign, and a law was passed to let students with disabilities walk or roll across the stage at graduation. It is called the Brittany Booth Bill. I was part of that advocacy along with many other people in the community.

I have learned so much about the amazing advocacy work in the last 40 years that includes the rehabilitation act, Public Law 94142, The ADA, Olmsted, Liga’s and more. All these public laws have opened doors for me to be included in my school, at UIC, in my place of worship, and in my work. I am so grateful for all the advocates who came before me and made my life opportunities possible. I think of Judy Heumann who was instrumental in disability rights legislation and all the champions like her.

We still have a LONG way to go, to live out the intent of the laws. I have been given a clear voice so I can advocate for others, who are marginalized and segregated due to their disabilities. In this state we have public laws for rights for people with disabilities to be included but the public laws that are important for inclusion have not always been followed. We must hold people and organizations accountable when they fail to help people live in the most integrated setting.  

1 https://www.eeoc.gov/statutes/rehabilitation-act-1973

2 https://sites.ed.gov/idea/IDEA

3 https://www.dhs.state.il.us/page.aspx?item=85190

Shifting Language in Physical Therapy when Working with People with Disabilities

By: Madison Turner, LEND PT Trainee

Physical therapy is a profession with a large emphasis on the movement system and physical function. Within the physical therapy realm, disability is defined as “an umbrella term for impairments, activity limitations and participation restrictions. It denotes the negative aspects of the interaction between a person’s health condition(s) and that individual’s contextual factors, environmental and personal factors.” (The ICF: An Overview - Centers for Disease Control and Prevention) This definition implies that any limitations with movement and participation is something that needs to be fixed and corrected during therapy treatment sessions. This language is something that is frequently used when reviewing charts and creating an image of the cases we are exposed to in our classes.

As I attend LEND sessions with self-advocates and family advocates coming to speak to us, I am realizing there needs to be a shift in language and in patient goals when working with patients with disabilities. I feel there is a large emphasis in my field to “fix” any impairments we find or any deviations from a typically functioning or typically developed individual. However, for people with disabilities that receive physical therapy, the reason for those treatment sessions is not always related to their disability and may instead be working to address a more acute injury.

Figure 1. Diagram of the International Classification of Functioning, Disability and Health. (Reference: Rimmer, 2006)

The International Classification of Functioning, Disability and Health (ICF) model is a tool commonly used by physical therapists when considering patient goals and prognosis. This model recognizes several factors that may affect an individual's ability to participate in treatment sessions and their motivation to get better. These factors include body function and structures, activities, and participation, as well as environmental and personal factors (The ICF: An Overview - Centers for Disease Control and Prevention).

This model is a great step to ensuring we take into account several factors before treating patients and determining their goals and prognosis. With that being said, there still seems to be a greater emphasis on the components of body function/structures and activities as those components are where physical therapists are experts. All 5 factors that are needed in this model should be considered when determining patient outcomes and priorities when it comes to creating the patient plan of care. The integration of the participation, environmental, and personal factors may help allow for treatment sessions to be more targeted for all patient populations, but perhaps especially for patients with disabilities as they may not be looking to have their impairments “fixed” but instead returned to their prior level of functioning.

References

1. The ICF: An overview - centers for disease control and prevention. Accessed September 28, 2023. https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf.

2. Rimmer JH. Use of the ICF in identifying factors that impact participation in physical activity/rehabilitation among people with disabilities. Disability and Rehabilitation. 2006;28(17):1087-1095. doi:10.1080/09638280500493860

3. World Health Organization. ICF: International Classification of Functioning, Disability and Health. World Health Organization: Geneva; 2002.