Trauma Informed Care in Higher Education

By: Lydia Delgado

Personal Experience

            I am so privileged to be a part of an Entry-level Doctor of Occupational Therapy (E-OTD) cohort that is empathetic and supportive. Without them, it would be very difficult for me to be successful. The ACEs in my past include abuse (sexual, emotional, and spiritual). I was admitted to the emergency room on my thirteenth birthday due to an overdose on Aspirin. After interviewing me, the doctor released me to my mother instead of contacting social services because he "trusted" her. I was twenty-four by the time I "escaped" my abusive environment. Unsurprisingly, I have had ongoing episodes of depression since I was eleven years old until now. After the birth of each of my babies, I experienced post-partum depression. My most recent depressive episode coincided with the birth of my second daughter in October 2023 while attending my doctoral program at UIC. It is important for me to share these experiences because statistically there is a substantial amount of people with high ACE scores. I am advocating for trauma-informed care and approaches in higher education because the mental health of students should not be minimized. While my past has been debilitating, I am resilient and capable. I also need extra support at times due to my intermittent episodes of depression. In the meantime, while work is still being done to advocate for TIC in higher education, I applaud the understanding and support my E-OTD cohort is extending to me. They are a vital bridge.

TIPS for Survival

·      Music is a source of comfort to me. I listen to songs that motivate me to continue. Here is a link to a song that I'm listening to today. https://www.youtube.com/watch?v=WfUkEgG5rEk

·      A community of trusted friends is vital. I need safe places to express negatively perceived emotions.

·      I have reconnected with my faith. It is now a source of comfort and strength instead of a tool used to shame and control me.

Conclusion

            I recently read the article, Understanding and applying trauma-informed approaches across occupation therapy settings, for a theory application paper that I wrote for my E-OTD program at UIC. When I started to evaluate my own experience as a graduate student, I must admit that in my experience, the mental health of students is not well supported in higher education. Additionally, the TedTalk: How Childhood Trauma Affects Health Across a Lifetime by Nadine Burke Harris is a pertinent challenging presentation on the effect of Adverse Childhood Experiences (ACE's) on overall health outcomes. Here is a link to the TedTalk. https://www.youtube.com/watch?v=95ovIJ3dsNk

Both mental and physical health are affected by trauma. It is my opinion, that given the prevalence of trauma (both past and present) in the lives of graduate students, higher educational facilities must learn to effectively incorporate both trauma-informed care (TIC) and a trauma-informed approach (TIA).

References

Fette, C., Lambdin-Pattavina, C., & Weaver, L. L. (2019). Understanding and applying trauma-

            informed approaches across occupational therapy settings. OT Practice, 24(5), 35.

YouTube. (2015, February 17). How childhood trauma affects health across a lifetime | Nadine    Burke Harris | Ted. YouTube. https://www.youtube.com/watch?v=95ovIJ3dsNk

YouTube. (2022, August 18). Rachael Lampa - perfectly loved (official lyric video) featuring       TOBYMAC. YouTube. https://www.youtube.com/watch?v=WfUkEgG5rEk

“Woke” and recent anti-DEI initiatives

By: Cydney Liebenberg

The term "woke" has undergone misappropriation over time, losing its original meaning of staying alert to societal issues. Instead, it has become associated with radicalism and division. However, being woke means being aware of social injustices without necessarily subscribing to any particular ideology.

Recently, there have been a lot of discussions surrounding Diversity, Equity, and Inclusion (DEI) initiatives that have sparked polarizing debates, which have been accompanied by anti-woke sentiments that seek to minimize the importance of these initiatives. Therefore, it is crucial to address these misunderstandings surrounding anti-DEI campaigns and recognize DEI's vital role in creating a fair and inclusive society.

A common misunderstanding is that anti-DEI somehow promotes equality for all. However, this overlooks the whole reason why DEI exists. It is to promote inclusion of individuals with disabilities as well as other minority communities. By disregarding DEI principles, we further disadvantage those already segregated, furthering inequality rather than addressing it.

This can be seen in institutions that have opted to eliminate DEI positions or initiatives. They claim to support diversity by showcasing a varied population within their institutions; however, this simple representation of inclusion falls short of creating a truly inclusive environment. Actual progress goes beyond just numbers; it should ensure the safety and support of marginalized communities within these institutions. The responsibility of advocating for DEI often falls on the shoulders of a few individuals, which can then lead to burnout and exhaustion. Constantly advocating for resources and recognition can take away from their ability to fully engage in work or academics, leading to a further disadvantage for those already marginalized. This is why it is essential for the buy-in of institutions as a whole.

In conclusion, anti-DEI sentiment comes from a misunderstanding of the principles of equity and inclusion. Rather than dismissing DEI initiatives as unnecessary, we should recognize their importance in breaking down systemic barriers and creating more equity in society. By promoting understanding and empathy, we can all work towards a future where everyone has the opportunity to thrive, regardless of their background or identity.

1.     It is disrupting the anti-’woke’ discourse. FrameWorks Institute. Accessed March 27, 2024. https://www.frameworksinstitute.org/article/disrupting-the-anti-woke-discourse/. 

2.     Stop W.O.K.E act (Florida) (2022). The Free Speech Center. February 19, 2024. Accessed March 27, 2024. https://firstamendment.mtsu.edu/article/stop-w-o-k-e-act-florida/. 

3.     Spinks-Franklin A.  Wake Up. Get Woke. Stay Woke!.  Journal of Developmental & Behavioral Pediatrics.  2020; 41 (7): 501-503.  doi: 10.1097/DBP.0000000000000858.

Listening to Combat Ableism in PT Practice

By: Deborah Sons, LEND PT Trainee

During my time as a LEND trainee, I have had the opportunity to learn about ableism and reflect on ableist practices in physical therapy. The American Psychology Association defines ableism as “prejudice and discrimination aimed at disabled people, often with a patronizing desire to ‘cure’ their disability and make them ‘normal’”1. Although physical therapists’ desire to cure impairments might come from pure intentions, this desire can lead to ableist assumptions and practices.

As a student physical therapist, I am being trained to identify patient impairments, activity limitations, and restriction in participation. Once these are identified, physical therapists create interventions and goals focused on resolving or reducing the impairments, restrictions, and limitations. Overall, the goal is to improve patients’ quality of life. This goal is displayed in the American Physical Therapy Association’s vision statement “Transforming society by optimizing movement to improve the human experience”2. Before participating in LEND, this vision statement was very clear to me. Improved movement leads to improved experience and quality of life. While being in LEND, I have learned that improved movement might not be the most appropriate goal. Every individual has a different idea of what the human experience should be.

In a video interview on ableism, Stacey Milburn, a disability rights activist, discussed her experience going to physical therapy three times a week as a child. She states that she did not understand the obsession with learning to walk and that she felt liberated when using a wheelchair3. Although her physical therapist believed that walking would increase her ability to participate with others on the playground and increase her ability to do everyday activities, walking was not crucial to Stacy’s idea of the human experience. If her physical therapist had understood or listened to Stacy’s desires, it would have saved her countless hours spent in physical therapy and other medical visits. As physical therapists, we need to prioritize understanding the patient’s experience and goals in order to plan proper treatment. 

I believe that active listening during the physical therapy examination will lead to proper care. During the examination, physical therapists are trained to ask questions on a patient’s prior level of function, social history, living environment, and lastly patient goals for therapy. If we truly listen to patients’ goals and what they expect to achieve out of therapy, we can treat them properly. A patient’s lived experience and desires matters more than our clinical expertise.

References:

1. Vision Statement for the Physical Therapy Profession. APTA. Published September 25, 2019. Accessed January 31, 2024. https://www.apta.org/apta-and-you/leadership-and-governance/policies/vision-statement-for-the-physical-therapy-profession

2. Understanding ableism and negative reactions to disability. Accessed January 30, 2024.https://www.apa.org/ed/precollege/psychology-teacher-network/introductory-psychology/ableism-negative-reactions-disability

3. Ableism Is The Bane of My Motherfuckin’ Existence.; 2017. Accessed January 31, 2024. https://www.youtube.com/watch?v=IelmZUxBIq0

Parents Taking Action - The Intersection Between Autism and Ethnic Minority Groups

By: Z Palafox

The Latino community represents the largest ethnic minority population in the United States. They are also one of the fastest-growing autism populations.1 The prevalence of autism spectrum disorder (ASD) among Latino children increased by 110% from 2002 to 2008, compared to a 70% increase among White children.1 Children that come from minority populations receive worse healthcare access. Latino children are less likely to receive an autism diagnosis, be administered assessments in their native language, receive special education services during their early years, and are less likely to receive evidence-based treatments or be included in intervention research. A needs assessment found that Latino families need more information about autism and helping their child, more formal and informal social support, and more financial support.1

Parents Taking Action (PTA) is a parent-mediated intervention that places parents at the center of their child’s care. The goal of PTA is to enhance caregiver knowledge of autism, develop caregiver advocacy strategies, and improve caregiver efficacy in addressing their child’s social communication skills. PTA also aims to do this all while being cost-effective and culturally responsive.

PTA uses a Community Health Worker Model also known as the Promotora de Salud Model in Spanish. A promotora is a peer leader who is indigenous to the Latino community and speaks Spanish. The promotora receives training to encourage behavioral modifications in a culturally responsive way. Having someone from the same community who speaks the same language can help parent buy-in. The mothers are more likely to trust and be comfortable with someone they can relate to.

A pilot study was conducted with 19 Spanish-speaking mothers of children with autism and the research found that the intervention was feasible to implement and well received by the mothers.1 With the success of the pilot study and the Latino community, PTA is now in the process of being implemented with other ethnic minority groups. The goal of PTA is to serve these ethnic minority groups by educating them and empowering them.

I learned about PTA through LEND last year when we were getting matched with our Research/Leadership Projects. I’m grateful to be a part of LEND and to be exposed to different opportunities to help serve underrepresented and marginalized communities. It is impactful work to be able to educate and equip parents with the tools they might need to support and raise their children with autism. There are numerous health disparities racial and ethnic minorities face so I am proud of the work we are doing at PTA to help decrease these disparities and attain health equity for all.

References

1. Magaña S, Lopez K, Machalicek W. Parents Taking Action: A Psycho‐Educational Intervention for Latino Parents of Children With Autism Spectrum Disorder. Family process. 2017;56(1):59-74. doi:10.1111/famp.12169

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.