The Veil of Ignorance and Disability Advocacy

By Aran Lim

A friend recently introduced me to a thought experiment called the “veil of ignorance” by political philosopher John Rawls (a wonderful YouTube video further explaining it is below).  In it, we are asked to imagine designing a society without knowing who we will be in it – i.e. our own race, socioeconomic status, gender, physical ability are unknown to us.  Naturally, most of us will be inclined to design a society that is as fair as possible, giving special consideration to the needs of the least privileged because we may ourselves belong to these groups.

This is, of course, impossible to directly translate into real life.  Try as I may, I cannot completely divorce myself from my own biases, conscious or subconscious.  However, I have found it to be a helpful tool in thinking about advocacy, in general and as it pertains to disability.

A dear family member of mine has a developmental disability. Observing the process of their diagnosis and ongoing experience as a disabled person galvanized my journey as an advocate. Initially, I was mostly motivated by the experience of this person whom I deeply love – and I remain motivated by this to this day. But it also became a gateway to advocacy more broadly. I began to engage with lawmakers and making phone calls to my congresspeople more regularly, voicing comments and concerns about policies and events that were directly relevant to me and those I cared about as well as those that did not personally affect me.

As I think about the work that remains, I can see the implications of the veil of ignorance on how I and others may approach disability advocacy. Although not perfectly practical, it serves as a poignant reminder of our shared humanity and the importance of empathy in advocacy and policymaking. As we grapple with the complexities of these processes, engaging with this mindset can lead to more robust, thoughtful actions that better address everyone's needs, and help reframe disability rights as a shared societal concern rather than a marginalized issue. By striving to create a world where everyone, regardless of their abilities, can thrive, we pave the way for a more just and equitable future for all.

How to Make Fair Laws: John Rawls and the Veil of Ignorance (youtube.com)

Image description: YouTube thumbnail with a solid purple background and text that says “John Rawls The Veil of Ignorance.”  On the right side of the thumbnail, there is a picture of John Rawls from the chest up.  He appears to be in his 60s.  He is a white man with medium length gray hair wearing large square glasses, a light suit, and dark tie.

Natural Disaster Plans for Individuals with Disabilities

By Elizabeth Murphy

Watching the national news has been particularly devastating lately. With the most recent natural disaster, Hurricane Milton, headed for Florida, many individuals are fleeing from its path. While evacuation orders cover large parts of the state, for many individuals with disabilities, leaving their homes is easier said than done. For some, this is due to a lack of transportation that is accessible for wheelchair users, while for others, it is due to having medical equipment that is difficult to move. For others who are D/deaf or hard of hearing, safety warnings and instructions are not always available in sign language, leaving them without access to crucial updates.

Even individuals who are able to reach immediate safety before a natural disaster hits are not in the clear. During the evacuation leading up to, and the weeks or months following, a natural disaster, access to mental and physical healthcare services are often limited. Power outages following disasters can be devastating for people who rely on corded medical supports and those who take prescription medications may be unable to access refills. In addition, people with disabilities are more than twice as likely to live in poverty than people without disabilities which can limit the accessibility of emergency planning. Poverty decreases the likelihood that individuals can create an emergency kit, take steps to mitigate damage to their homes, and purchase generators or extra supplies of medications. These factors have devastating effects – people with disabilities are up to four times more likely to die from natural disasters than those without disabilities.

There is a desperate need for increased emergency planning to ensure the safety of individuals with disabilities as much as those without disabilities. I did learn about shelters specifically for the former population while reading about Hurricane Milton. Florida has “special needs shelters” specifically for individuals with disabilities and complex medical needs. Complex medical equipment and care are not available at these shelter locations, but they have back-up electricity sources to power necessary medical equipment and lights. As of the morning of October 8, 2024, there were 15 of these shelters across seven Florida counties and more are expected to open in additional counties as the hurricane draws closer. As of a few hours later, there were 700 individuals sheltering in these locations, not including caregivers, who were encouraged to accompany the people they support when applicable.

While I was encouraged by learning of these shelters for Florida residents with disabilities, I am still painfully aware of how ill-prepared society is when it comes to supporting individuals with disabilities during natural disasters. In times of crisis, we strive to have plans and resources mapped out, but like in many other circumstances, individuals with disabilities have fallen through the cracks. We must do better to protect the lives of individuals with and without disabilities equally, in and out of times of crisis.

Sources

Center for Disaster Philanthropy (CDP). (n.d.). People with Disabilities. Center for Disaster Philanthropy. https://disasterphilanthropy.org/resources/people-with-disabilities/

Florida Department of Health (FDOH). Special Needs Shelter Program (n.d.) https://www.floridahealth.gov/programs-and-services/emergency-preparedness-and-response/disaster-response-resources/spns-index.html

Kekatos, M. (2024, October 8). Special needs shelters open across Florida ahead of Hurricane Milton’s landfall. ABC News. https://abcnews.go.com/US/special-shelters-open-florida-ahead-hurricane-miltons-landfall/story?id=114591006

Wolfe, L. (2023, January 27). Left Behind: Disabled People and Natural Disasters. Women’s Media Center. https://womensmediacenter.com/climate/left-behind

My Neurodivergent, Invisible Illness

By Lisa Hayes

On Sunday, December 6, 2015 I woke up with a swollen tongue and a sore mouth.      I was exhausted even though I had slept that past night and for some reason I had soaked the covers on the bed. I didn’t feel well that day but when you have three boys you don’t get much down time.

Two days later, it happened again. My husband said to me “I think you had a seizure.” 

An appointment later that day confirmed what my husband had suspected. A seizure disorder. Epilepsy. Levetiracetam, 500 MG, twice a day. No driving, for Six Months. What was I to do? I drove three boys EVERYWHERE!

After that I was given the task of finding a neurologist to treat my disease. At the time that was not an easy task because there were barely a handful in the St. Louis area. I found one about an hour away, he would see me the following March.

On the day of the appointment we discussed my symptoms, my need for an MRI and the joy of having an EKG. Both tests came back inconclusive but as a woman in my 40’s possible causes included:

Stress 

Hormones 

A head injury

I was also told it was rather common for women my age to have seizures though hearing this did nothing to soothe my longing for an answer. I was told that for the time being I could not drive, not up the street to the school the boys attended, not to the grocery store, no where. The good news was, however, that instead of waiting six months to drive, I only had to wait three. If I remained seizure free until March 6, 2015, I would gain driving privileges again. 

To this day I have remained seizure free and on medication. I taught my oldest what to do to stop the car if I started to seize while I was driving and he took it in stride. Thank goodness he never had to put those skills to the test. Two years ago a young neurologist opened an office closer to home so I switched care to him– I was spending more time driving to St. Louis and back then I was actually spending seeing the doctor or the PA. 

My reflexes are tested once a year and I walk on my tiptoes in a straight line. My disability is invisible unless I disclose it though I don’t consider it a disability, just something I will live with for the rest of my life. The only time I choose to disclose that I have an invisible illness is when I’m at the doctor filling out forms or when they go through my medical chart during a check-up. 

I did disclose it on a form while I was working in the classroom at a nearby school. The nurse passed out emergency contact forms and on it was a section that talked about illness and who to contact if there happened to be an emergency. I never had to use that contact but I often wondered if my illness was one of the reasons I was released from my employment last August.

In conclusion, when it comes to your own invisible illness it’s up to you to decide who to tell. Honestly, however, it isn’t the business of an adversary to dictate how you live your life. Be proud of who you are and don’t ever let the opinion of someone else get you down.

Brush Up on Your Community: Space for Autistic Artists in Chicago

by Taylor Webb

Art connects us, inspires us and engages us. Community art spaces are accessible environments dedicated to exploring creativity and fostering social connections. They represent opportunities for experimenting with new ideas and collaborating with other creatives. Art transcends traditional ideas of social acceptability and norms by opening the mind of the viewer to the artist’s world view.

Art is an area where many autistic individuals excel. Their art reflects their unique experiences and perspectives via a physical representation of emotions and language. It offers a method of communication for those who are non-verbal and a safe space for emotional processing. Non-autistic artists and community members have much to learn from the imagination and expression of artists with disabilities.

Whether you are an autistic artist looking to participate or a non-artistic artist looking to appreciate new art, there are two local spaces in Chicago that are a must-visit:

1. Project Onward at 1200 W. 35th St. Chicago, IL 60609
This non-profit’s gallery is on the 4th floor of the Bridgeport Art Center. The studio is wheelchair accessible and is open for a visit Monday and Tuesday by appointment only and Wednesday to Saturday from 11 am - 5 pm.

They aim to create an inclusive and diverse environment for individuals with disabilities to create and sell their work. They emphasize free access to workspace, materials and guidance if the artist wishes. They hold professional exhibitions and community events to buy and sell art. Project onward currently supports more than 60 either autistic artists or artists with other disabilities - and is accepting more.

This 18 x 24 oil on canvas piece by Michelle Livingston titled “Sacred love” is currently available for $350.00.

Image Caption: Livingston, Michelle. Sacred Love. Project Onward, https://www.projectonward.org/product-page/sacred-love-by Accessed 2024.

On September 20th, “The Beastiarium” Exhibition is open from 6-9 pm.

Shop more original works here: https://www.projectonward.org/shop-all

They encourage donations which can be made here: https://www.projectonward.org/donate

Learn more about Project Onward here: https://www.projectonward.org/

2. Arts of Life at 2010 W Carroll Ave Chicago, IL 60612 or1963 Johns Drive Glenview, IL 60025 or 6400 South Kimbark Chicago, IL 60637
This non-profit was started in January 2000, and they aim to “create a person-centric, working artistic community and provide a work environment of equality and inclusion in Chicago.”

Arts of Life offers a meaningful career in the visual arts for artists with both physical and intellectual disabilities. Each artist has individual studio space and creative independence. Artists receive a monthly stipend, leadership opportunities and share their art in community galleries.

You can inquire about this 12 x 8.5 marker and pen on paper piece titled “Pup and Kitty in a Flower Bed, 2023 by Rocco DiCaro.

Image caption: DiCaro, Rocco. Pup and Kitty in a Flower Bed, 2023. Arts of Life, https://artsoflife.org/artwork/pup-and-kitty-in-a-flower-bed/ Accessed 2024.

Their exhibition “Spirit Spirits” at Circle Contemporary Chicago is available from September 27th - November 10th with the opening reception on 9/27 from 5-8 pm.

Donations to Arts of Life can be made here: https://artsoflife.org/donate/

Learn more about Arts of Life here: https://artsoflife.org/

These spaces are just two local opportunities to engage with art and your local community. I highly recommend paying them a visit, discussing the artists’ work with them and purchasing their art either in person or online. Together we can reinforce community art programs and support disabled artists in Chicago!

Bibliography

Arts of Life, 11 Apr. 2024, artsoflife.org.

“Nonprofit Art Studio and Gallery in Chicago.” Project Onward, www.projectonward.org/. Accessed 10 Sept. 2024.

How the Education System Failed My Brother

By: Alexandra Zugaj, SPT, LEND Trainee

A teacher bends over a child and points her finger at them. The child sits looking down with arms crossed. They are both in front of a chalkboard.

The pressure of being an oldest child is overbearing. You want to be the perfect child for your parents; get good grades, complete all the chores, take care of your younger brother. You also want to be the perfect sister to your younger brother; help him with school, protect him from the bullies, and keep him happy. With so many things on your plate what do you do when your brother is diagnosed with a neurodevelopmental disorder and the school system turns their back on your family?

My brother was very hyper as a kid. He had a hard time sitting still for prolonged periods of time or focusing on one task. This became more evident when he started kindergarten. He would stand up and walk around the classroom when the teacher would be giving a presentation. He wouldn’t be able to sit through class without talking to his friends. My parents were always getting a call from the principal’s office about something that had occurred. During parent teacher conferences, my mom always had to hear about how my brother doesn’t study, listen, or stay seated throughout class. As the complaints from teachers continued to pile on my mom decided to go to our family doctor to see if there was something else going on. At the age of 7, my brother was diagnosed with attention deficit hyperactivity disorder. The main signs of the neurodevelopmental disorder include being unable to sit still, fidgeting, excessive talking, interrupting conversations, having a short attention span, making careless mistakes, unable to carry out instructions, etc. (Mayo Clinic) All of these symptoms were consistent with how my brother was presenting at school and at home. 

My mom thought that this diagnosis would bring some explanation to his actions at school and would resolve the constant complaints from the teachers and the principal. She couldn’t have been more wrong. My brother’s teacher did not hesitate to tell my mom that ADHD was a fake diagnosis and that it was an excuse for her horrible parenting. The insults escalated to calling my brother “the devil’s child” and my mom “an unfit parent.” My mom was constantly hearing negative comments about herself and her son. My brother was constantly bullied by his peers due to the comments made by his teacher. The constant hate without any outside help led to the deterioration of my mom’s mental health and my brother’s self-esteem. 

My family was not provided with resources that would be helpful in helping my brother succeed in life. My family did not know that there are rights that protect my brother, and which strive to help him achieve his accomplishments. Here are a few ways parents can help their children with ADHD created with the help of a blog on ADDitude by Penny Williams:

1. Look at the staff at school as your team members! Don’t look at them as your enemy or someone working against you or your child.

2. Try to stay calm and keep emotions out of your conversations with school staff.

3. Submit Parent Concerns Letters accompanied by Present Levels of Performance Letter to the IEP or 504 team at least 2 days before school meetings.

4. Use email communications to keep everything in writing.

5. Observe your child’s behaviors and work with them to determine the root of the problems.

6. Listen to your child and validate their feelings! Make sure they know that their thoughts, feelings, and concerns MATTER!

7. Teach them to advocate for themselves in society!

The following link is an informative hour-long video that shares information to help parents advocate for their children with ADHD: https://youtu.be/MzoZIkordqA?si=cARJefcQ_MREdoYf

Here is the link to the blog by Penny Williams cited above:

• https://www.additudemag.com/how-to-advocate-for-your-child-guide-for-adhd-parents/

Resources on being an advocate for your child:

• https://childmind.org/article/being-an-effective-advocate-for-your-child/

• https://huntingtonhelps.com/blog/the-importance-of-teaching-self-advocacy-skills-to-children-with-adhd/

Fighting RA with Fork and Spoon: The Ultimate Guide to Eating for Joint Health

By: Shivani Patel, SPT, LEND PT Trainee

A wood table covered in brightly colored fruits, vegetables, and grains.

I was just 20 years old when I joined the disability community through a severe rheumatoid arthritis (RA) diagnosis. Going from never getting sick to suddenly having a lifelong autoimmune disorder was a shock for both me and my family. We had to make countless adjustments to accommodate my new reality, but the journey wasn't always smooth. I cycled through numerous medications, underwent occupational therapy for my hands, and tried physical therapy for pain management—yet nothing seemed to provide lasting relief.

Ironically, the onset of the COVID-19 pandemic became a turning point in my life. As I navigated the challenges of being immunocompromised, I realized that it was the perfect time to explore holistic methods of managing my condition. Four years later, I’ve discovered what works for me—a blend of evidence-based practices that allow me to live better, pursue my passions, and share my hard-earned knowledge with others who may be on a similar journey.

Rheumatoid arthritis (RA) is a chronic inflammatory disorder that primarily affects the joints, leading to pain, swelling, and potential loss of function. While there is no cure, managing RA effectively often involves a combination of medication, physical therapy, and lifestyle changes—including diet. The foods you eat can have a significant impact on inflammation and overall joint health. Here are some of the best nutrition tips to help manage rheumatoid arthritis.

Disclaimer: Always consult your doctor before making any significant changes to your diet or medication.

1. Incorporate Anti-Inflammatory Foods

Inflammation is at the core of rheumatoid arthritis, so a diet rich in anti-inflammatory foods can help alleviate symptoms. Omega-3 fatty acids, found in fatty fish like salmon, mackerel, and sardines, are particularly effective in reducing inflammation. Aim to include these types of fish in your diet at least twice a week. If you’re not a fan of fish, consider adding flaxseeds, chia seeds, or walnuts to your meals, as they are plant-based sources of omega-3s.

2. Load Up on Fruits and Vegetables

Fruits and vegetables are packed with vitamins, minerals, and antioxidants, which can help fight inflammation. Berries, such as blueberries and strawberries, are particularly high in antioxidants. Leafy greens like spinach, kale, and broccoli are also excellent choices due to their high content of vitamins C and K, which have anti-inflammatory properties. Try to fill half of your plate with a variety of fruits and vegetables at each meal to ensure you’re getting a wide range of nutrients.

3. Choose Whole Grains Over Refined Grains

Whole grains like brown rice, quinoa, barley, and oats are better choices than refined grains like white bread and pasta. Whole grains have higher fiber content, which helps lower inflammation by stabilizing blood sugar levels. They also provide important nutrients like B vitamins and magnesium, which are crucial for overall health. Make it a habit to swap out refined grains for whole grains in your meals.

4. Opt for Healthy Fats

Not all fats are created equal. While saturated and trans fats can exacerbate inflammation, healthy fats can actually help reduce it. Olive oil is an excellent source of monounsaturated fat, which has anti-inflammatory properties. Avocados, nuts, and seeds are other good sources of healthy fats. Try using olive oil as your primary cooking oil and adding a handful of nuts or a slice of avocado to your meals for a healthy fat boost.

5. Limit Sugar and Processed Foods

Sugary foods and beverages, as well as processed foods, can trigger inflammation and worsen RA symptoms. These foods often contain unhealthy fats, refined grains, and artificial additives that can increase inflammation. Try to minimize your intake of sugary snacks, sodas, and processed foods like chips and fast food. Instead, opt for whole, unprocessed foods that nourish your body and support your overall health.

6. Stay Hydrated

Proper hydration is essential for everyone, but it’s especially important for those with rheumatoid arthritis. Water helps keep joints lubricated and aids in the removal of toxins from the body. Aim to drink at least 8-10 cups of water a day, more if you’re active or live in a hot climate. Herbal teas and water-rich fruits like watermelon can also contribute to your daily fluid intake.

7. Consider Supplements Wisely

Certain supplements may be beneficial for managing rheumatoid arthritis, but it’s important to consult with your healthcare provider before starting any new supplement regimen. Fish oil supplements, rich in omega-3s, have been shown to reduce joint pain and stiffness. Vitamin D is another important nutrient for bone health, and a deficiency can exacerbate RA symptoms. Your healthcare provider can help determine if supplements are necessary and recommend the right dosage.

8. Maintain a Healthy Weight

Excess weight puts additional stress on your joints, particularly weight-bearing joints like the knees and hips. Losing even a small amount of weight can help reduce the pressure on your joints and alleviate some RA symptoms. Focus on a balanced diet that includes plenty of fruits, vegetables, whole grains, and lean proteins to help you maintain a healthy weight.

While diet alone cannot cure rheumatoid arthritis, making informed food choices can significantly impact the severity of your symptoms and improve your quality of life. Incorporate anti-inflammatory foods, stay hydrated, and maintain a healthy weight to support your joints and overall health. As always, consult with your healthcare provider or a registered dietitian to tailor these tips to your specific needs and ensure they align with your treatment plan.

Down Syndrome Awareness – Policy and Advocacy for the Community

By: Alex Barkhimer

Faint blue and yellow background featuring abstract round shapes. A large blue and yellow ribbon graphic design symbolizes Down syndrome awareness with text "October Down Syndrome Awareness Month.”

October is Down Syndrome Awareness Month! This month focuses on supporting the Down syndrome community by celebrating, raising awareness, breaking down barriers, and promoting policy and advocacy.

Did you know that some exciting policies supported by national Down syndrome organizations are currently making their way through Congress?

The Charlotte Woodward Organ Transplant Discrimination Prevention Act passed the House of Representatives in late September 2024. This monumental legislation prohibits discrimination against people with disabilities in need of an organ transplant. In other words, this act would prevent providers from denying an individual an organ transplant solely based on the fact that the person has a disability. This legislation is especially significant for the Down syndrome community as many individuals with Down syndrome face an increased risk for conditions that may require organ transplants (e.g., 50% of infants with Down syndrome have a heart condition). The Charlotte Woodward Organ Transplant Discrimination Prevention Act is a meaningful step towards inclusivity in healthcare!

The National Alzheimer's Project Act (NAPA) Reauthorization was passed by the House of Representatives in late September. Having cleared the Senate earlier this year, it is now heading to the president’s desk to be signed into law. This reauthorization will extend NAPA until 2035 and put focus on promoting healthy aging and reducing risk factors. The bill also emphasizes the inclusion of underserved populations, such as those with Down syndrome. This focus is critical as individuals with Down syndrome have a 90% lifetime risk of developing Alzheimer's disease. This high rate is mainly because people with Down syndrome have an extra copy of chromosome 21, which carries the amyloid precursor protein (APP) gene strongly associated with Alzheimer’s disease.

Below is a non-exhaustive list of my favorite organizations, groups, and hashtags to follow to learn more about the Down syndrome community throughout the month of October and beyond!

National Down Syndrome Society on Facebook (also on Instagram and TikTok)

National Down Syndrome Congress on Instagram (also on Facebook)

Black Down Syndrome Association

Candidly Kind

Happiness is Down syndrome on Instagram

#DownSyndromeAwarenessMonth #DownSyndromeAwareness #Downsyndrome

References

Alzheimer’s disease toolkit. National Down Syndrome Society (NDSS). (2024a). https://ndss.org/alzheimers-disease-toolkit#p_1327 

Charlotte Woodward organ transplant discrimination prevention act passes house. National Down Syndrome Society (NDSS). (2024, September 24). https://ndss.org/news/charlotte-woodward-organ-transplant-discrimination-prevention-act-passes-house-0 

Delany, D. R., Gaydos, S. S., Romeo, D. A., Henderson, H. T., Fogg, K. L., McKeta, A. S., Kavarana, M. N., & Costello, J. M. (2021). Down syndrome and congenital heart disease: perioperative planning and management. Journal of Congenital Cardiology, 5(1), 1–14. https://doi-org.proxy2.library.illinois.edu/10.1186/s40949-021-00061-3

Down syndrome and alzheimer’s disease. Alzheimer’s Association. (2024, July). https://www.alz.org/media/documents/alzheimers-dementia-down-syndrome-ts.pdf 

National down syndrome society (NDSS). National Down Syndrome Society (NDSS). (n.d.). https://ndss.org/ 

Traveling with Autistic Kiddos

By: Kelley Hollie, LMSW

I recently traveled by airplane from Arizona to visit family in Texas. It took weeks of planning but, thankfully, resulted in a smooth trip for our little family of four. My husband and I have two children, both of whom are autistic (ages 6 and 4). My son is nonverbal, and my daughter can speak but presents as selectively mute with unfamiliar people. Additionally, my children wear AFOs (leg braces) on their legs. As a bonus, my son suffers from chronic constipation, and incidents of soiling are a regular occurrence for us.

I was stressed about traveling to Texas over the Christmas holiday to see family and friends. This was the first trip home that we were making since my daughter had been born four years ago and we had been forced to survive the pandemic. She would be introduced to her paternal extended family, including older cousins, and meet some of our closest friends. We would be traveling to Houston and then spending a few days in Waco before returning to Phoenix.

Here are some of my top tips for traveling with autistic children:

1)         I used social stories to prepare my kids for our trip via airplane. We read lots of stories about traveling. I looked for children’s programming that showed travel so that they could get familiar. Some of my favorite children’s characters have episodes or stories about travel including Daniel Tiger, Bluey, Frozen, Mister Roger’s Neighborhood, and Sesame Street.

2)         I allowed my daughter to help me pick out the clothes we packed in our suitcases. This helped her to feel included and allowed her to have some control. She picked out the shoes she would wear and provided the outfit she would wear for family photos.

3)         I met with my in-laws and extended family virtually before we traveled to prepare them for our children’s behavior. I wanted them to have reasonable expectations around behavior with our children. I talked with them about my daughter’s anxiety and let them know that she probably wouldn’t hug them all straight away, and that was okay. They are family but unfamiliar family, and she needed time to get to know them. I talked with them about my son who stims by humming, yelling, tapping on objects, hand flapping, and spinning. I let them know that stimming was a positive thing for my son, and with time, they would be able to distinguish between happy stims from anxious or upset stims. I talked about their environment and encouraged them to move breakable or fragile items out of reach of our children so they didn’t wind up broken. We talked about how to introduce the kids to family pets so that they felt safe and supported. We also talked about my kids’ inability to stand still and smile for the camera so they had reasonable expectations when we took our Christmas family photo.

4)         I let security know that my kids were autistic and had leg braces so we could move through a special accommodation line (fewer people) in security. My husband was able to walk through it while carrying our daughter, and I had our son. Security did not allow us to remove the AFOs before going through security.

5)         I packed a change of clothes including socks and extra pull-ups and wipes in case my son had an accident while travelling. We packed hand sanitizer, bags to store soiled clothing, and baby powder. I knew changing him on the airplane would be tricky since the changing table is not intended for use for bigger children.

6)         I found out that there was a sensory room at the airport in Phoenix so that we could access it before our flight. My son could jump on a mini-trampoline, run around, and be noisy before getting on a long flight.

7)         I downloaded two movies to my daughter’s tablet so she had something to watch that would not rely on Wi-Fi. We practiced wearing headphones so she could hear the sound for a few days before our trip.

8)         I looked up events in Houston and Waco that might be autism-friendly or specific. We were able to go to a Sensitive Santa event, which had a smaller number of children present, dimmed lights, and no Christmas music playing. My son, who can’t sit still, could stim happily and be included in a holiday photo. We spent one evening driving around looking at Christmas lights in the car with hot chocolate. We went to a play area for kids with a specific time set aside for kids with disabilities or sensory issues.

9)         We prepared our extended family to have on hand the snacks and treats that our kids enjoyed the most (cheez-its, chocolate chip cookies, chicken nuggets, and tater tots) at home. We traveled with snacks we knew our kids would eat on the flights.

10)   I packed bath stuff and pillowcases from home for them so their environment would still smell the same even though we were in a different location. This was helpful for supporting my son’s emotional regulation on our trip.

11)   While dropping off our bags at check-in, we requested wheelchairs for our kids so they wouldn’t have to walk the distance from security to the gate. This saved us so much time!

12)   We traveled with empty water bottles, made it through security, and then filled our bottles at the water fountain near our gate. This saved us money that would have been spent on expensive bottled water.

Work and wages: What are they worth? The legacy of Section 14c of the Fair Labor Standards Act and the rights of workers with disabilities

By: Julie Buchanan

In 2019, almost 10,000 people answered the U.S. Commission on Civil Rights’ call for comment on Section 14c of the Fair Labor Standards Act (FLSA).  More than 80 years after 14c was enacted and 40 years since community integrated employment programs for people with intellectual/developmental disabilities (I/DD) first appeared across the country, there is a flurry of advocacy around 14c.  Advocates are not the only ones paying attention.  14c has the attention of state and federal decision-makers.  Thirteen states have passed legislation to eliminate it and five others introduced legislation to curtail it (APSE, 2023).  Members of Congress and President Biden sought to end 14c with federal legislation.  And, since 2019 three federal agencies have conducted extensive reviews of the program. 

Section 14c allows employers to pay workers less than minimum wage if they have a disability that impairs their ability to do the job (Disability Employment TA Center, 2023).  In the decades that followed its implementation, 14c grew to take on an outsized role in employment for people with disabilities.  Facility-based employment, often known as sheltered workshops where workers with disabilities may earn sub minimum wage, became the prevailing employment service option for people I/DD.  By 2007 there were “approximately 5,600 employers nationwide…employing approximately 425,000 individuals with disabilities at sub-minimum wage (Butterworth et al., 2007).

               Modern notions of disability are worlds away from where they were when 14c was enacted.  Thanks to the disability rights movement that rejected the idea that I/DD was an affliction that left people incapable of being active agents in their lives; notions like informed choice, integration, and self-determination are embedded in civil rights laws, Supreme Court case law, and public policy.

               Title II of the Americans with Disabilities Act and it’s integration mandate, the U.S. Supreme Court’s 1999 decision in Olmstead v. L.C., the Workforce Innovation and Opportunity Act of 2014, and the Home and Community Based Services Settings Rule of 2014 are potentially powerful directives with significant implications for state vocational and employment programs for people with disabilities; putting restrictions on 14c and holding states accountable for providing community integrated services.

               Competitive integrated employment and Section 14c:  Incompatible models, committed coalitions, and a flurry of advocacy

               Competitive integrated employment means a worker with disabilities is employed alongside people without disabilities; earning at least minimum wage and one that is comparable to workers without disabilities, with the same benefits as their nondisabled peers.  It is the clear priority in the current statutory and legal landscape.  Eliminating 14c and making CIE the preferred option in disability employment supports is a long-time goal of integrated employment advocates, while a sizeable coalition of people with disabilities, families, and 14c certificate holders rally in support of the law.  

  Proponents of abolishing 14c argue it violates disabled workers’ civil rights and perpetuates the myth that people with disabilities are not as valuable as people without disabilities  (APSE, 2019; USCCR, 2020).   The Association of People Supporting Employment First (APSE), a long-standing integrated employment advocacy organization has been calling for the end of 14c since 2009.  They argue that in today’s economy, productivity is not the only consideration in determining wages; today’s employers value other qualities that people bring to the job (APSE, 2019).  Discrimination based on productive capacity is only one of many arguments for eliminating 14c—

·       14c reinforces “a life poverty, segregation, and dependency on public support…”

·       “We have dreams and we are tired of low expectations.”

·       “Individuals…should have…supports necessary to enable them to find, keep, and succeed in careers in their communities” (USCCR, 2019).

         Proponents of 14c argue that eliminating it will force workshops to close, leaving their loved ones no options for employment, and take away their power to choose facility-based employment—

·   “Taking away the environment in which they thrive and feel comfortable would do more damage than increased wages would do good (USCCR, 2020; p. 91). 

·   “I am here because I choose to be here and because this job matters to me” (p. 92).

            A deeper understanding of people with disabilities’ perspectives on employment and 14c can be found in the comments at the USCCR Public Briefing and its report, "Sub-minimum wage:  Impacts on the Civil Rights of People with Disabilities.”  After all, their livelihoods are central in this debate and the weight of this responsibility should stay top of mind.  

            The future of Section 14c

The 2016 Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities and the U.S. Commission on Civil Rights in 2020 recommended repealing 14c and building capacity for CIE.

            The USCCR and the U.S. Government Accountability Office found problems with oversight and monitoring of 14c.  ASPE and others echoed those concerns, pointing out a lack of data collection and transparency—data on 14c workers’ wages, their production rates, and monitoring of the program.  These problems with oversight are alarming.  If 14c participants are expected to forfeit a right as fundamental as the right to minimum wage, especially given the discrimination and marginalization people with disabilities have experienced, federal agencies should be hyper vigilant about monitoring.  In his testimony to the USCCR, Neil Romano of the National Council on Disability remarked, “we collect data on things we view as important, and historically we just don't count people with disabilities (USCCR, 2020, p. xii).

            In the fall of 2023, the U.S. Department of Labor, which oversees the 14c program, announced its own review.  Stakeholder listening sessions were held late in 2023 and updates will be available here. 

Resources

The Association of People Supporting Employment First (ASPE) provides information on current trends and legislation related to 14c and integrated employment for people with disabilities.

Learn about the application of Olmstead in Lane v. Brown (formerly Lane v. Kitzhaber), the first Olmstead case to decide a state violated Title II of the ADA because its I/DD employment system segregated people and denied them access to integrated employment.

References

APSE.  (2019).  Association of people supporting employment first call to phase out 14c and subminimum     wage by 2022.  https://apse.org/wp-content/uploads/2019/04/APSE-14c-Documents-4-17-   19-Shorter-Version.pdf

APSE. (2022). Trends and Current Status of 14c.                                                                          

            https://apse.org/wp-content/uploads/2022/09/July22-APSE-14c-Update-REV.pdf

APSE. (2023) 2023 State Legislative Watch. https://apse.org/state-legislation/

Butterworth, J., Hall, A., Hoff, D., & Migliore, A. (2007).  State and International Efforts to Reform

            or Eliminate the Use of Sub-Minimum Wage for Persons with Disabilities. Boston (MA):

Institute for Community Inclusion, University of Massachusetts Boston.

Disability Employment TA Center. (2023).  Celebrating Olmstead. Exploring the 14c report and national       trends in the movement to end segregation and exploitation of people with disabilities.

https://aoddisabilityemploymenttacenter.com/celebrating-olmstead-exploring-the-14c-report-and-national-trends-in-the-movement-to-end-segregation-and-exploitation-of-people-with-disabilities/

Migliore, A., (2010).  Sheltered Workshops.  International Encyclopedia of Rehabilitation. Buffalo (NY):         Center for International Rehabilitation Research Information and Exchange.

United States Commission on Civil Rights. (2019, November 15).  Briefing  Subminimum Wages, People with            Disabilities, Open Comment Session. https://www.youtube.com/watch?v=3d3amzjF1mw

United States Commission on Civil Rights. (2020).  Subminimum wages:  Impacts on the civil rights of people with disabilities, 2020 statutory enforcement report. https://www.usccr.gov/files/2020/2020-09-17-Subminimum-Wages-Report.pdf

United States Department of Labor. (2021). Sub minimum wage. https://www.dol.gov/agencies/whd/special-employment

United States Government Accountability Office. (2023). Subminimum Wage Program: DOL Could Do        More to Ensure Timely Oversight. https://www.gao.gov/products/gao-23-105116

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