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1. Click the icon on the right to listen to the full article (coming soon).
2. Right-click here and “save as” or “save link as” to save an mp3 of the article to your computer (coming soon).
3. Listen to sections of the article by pressing the play buttons that appear before a set of words in the article below (coming soon).

Older People Need Support

Jessica Sifuentes

BEFORE YOU READ:
Look up ventricular fibrillation. Practice pronouncing it. Notice the words malnourished, dehydrated, and geriatric. Try to figure out what they mean from the context.

My Patient Was Waiting to Die
Many older adults have spent their whole lives taking care of themselves and their families. As they get older, the opposite might be true. They might need someone to take care of them. This is harder than we can imagine. Older people sometimes feel like they no longer are an authority in their own life.

I worked as a geriatric care provider in the United States. The patient that I took care of was 85 years old. When I started working with him, he was in very bad condition physically and mentally. He had ventricular fibrillation, a heart condition that made him have a low heart rate. Also, he was malnourished and dehydrated because he did not want to eat or drink. He did not like to take a shower or get out of bed. As a consequence, he slept most of the time, and he was getting very weak. He told me that he had done enough in his life, and he was waiting to die.

His Family Did Not Know How to Care for Him
His family thought they were being compassion-ate. They did not encourage him to get out of bed and do things. But the reality was that his family did not have the knowledge to take care of him. It was not because they did not love him. It’s just that no one educated them.

I understood why he did not want to get out of bed. He was depressed about his limitations. He was afraid of falling and of feeling more pain. He felt he was no longer “useful.” I kept working with him. I tried to teach him and his family that he could learn a new lifestyle. I explained that it might be hard and frustrating but not impossible.

It took four months, and finally everyone started to understand. He started to eat more, so he had more energy. He started being able to do basic things. Of course, he did them slowly and with help. The family understood the importance of helping him no matter how difficult it was.

Educate and Advocate
As people get older, they might become more disabled. Our society sometimes rejects older people. We don’t give them the resources they need to live fully. We should educate people and advocate for older people. Their life should be easy and comfortable in their golden age.

Jessica Sifuentes is a student at Yselta Community Learning Center in El Paso, Texas. She is from Chihuahua, Mexico, and she is married and the mother of three children. She is working to get her nursing degree from Mexico validated in the U.S.

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3 WAYS TO LISTEN

1. Click the icon on the right to listen to the full article (coming soon).
2. Right-click here and “save as” or “save link as” to save an mp3 of the article to your computer (coming soon).
3. Listen to sections of the article by pressing the play buttons that appear before a set of words in the article below (coming soon).

A Short Life, a Long Lesson: What My Nephew Taught Me About Disability and Dignity

Bruna Almeida

BEFORE YOU READ:
This article has some hard, technical words in it. What strategies do you use when you come across this type of word?

Born with Many Difficulties
My nephew Benício was born in Brazil in 2019, and from his very first breath, he began a fight most of us will never understand. He was born with breathing difficulties that kept him in an incubator for a week. He had extra fingers and toes, which made the doctors suspect that he had a syndrome. But they didn’t investigate further.

At two months old, he had his first seizures. That moment marked the beginning of a long and painful journey—one that exposed not only the fragility of the human body, but the many failures of our society in how we treat people with disabilities.

More than a year and countless hospital visits later, Benício was diagnosed with 1p36 Deletion Syndrome—a rare genetic condition that causes developmental delays, epilepsy, and a range of physical and intellectual challenges. Some years later, he also received a diagnosis of Lennox-Gastaut Syndrome, a severe form of epilepsy. Over time, he suffered many seizures and had developmental delays.

We Advocated for Him to Get Proper Care
Getting access to care was incredibly difficult, even though we had private health insurance. Therapies were denied. Specialists refused to take his case. Many simply said they had no experience with his condition.

This is one of the first and deepest injustices people with disabilities face: being seen as too complicated, too rare, too hard to help. But no life is too small or too complex to be treated with dignity. Benício was not a case. He was a boy—a boy with a family that loved him fiercely, and a quiet strength that left us all in awe.

In 2024, he had a severe pneumonia and was hospitalized for 67 days. He needed a tracheostomy to breathe, and from that point on, his health became even more fragile. In January 2025, he got another pneumonia and passed away two days later.

Before he died, we finally managed to get access to a cannabis-based medication that science strongly supports for his condition. For months, we had asked doctors to consider it, but many insisted on exhausting “traditional” options first. He was only prescribed the treatment at the very end—but even in that short time, we saw small changes. He began to follow our voices with his eyes. He seemed more present. We had hope. And then, it was gone.

We Need a Truly Inclusive Society
Benício’s story is not just about a disease. It’s about the way our systems fail people who need the most support—and how society often reduces disability to an inconvenience or a problem, instead of recognizing it as a part of human diversity. The problem is how unprepared—and often unwilling—society is to adapt.

In many cultures, disability is still seen through a lens of pity, or worse, invisibility. People avoid the topic. They don’t know how to act. They speak in terms that reduce the person to their condition: “a disabled child,” “a special needs kid,” rather than a child who happens to have a disability. Language matters. It shapes perception. And perception shapes action.

If we want to build a truly inclusive society, we need more than just ramps and accessible bathrooms. We need accessible systems—health care, education, therapies—that actually reach those who need them. We need policies that don’t delay effective treatments out of fear or bureaucracy. We need to listen to families, and to the people with disabilities themselves.

Benício’s life was short, but it changed ours forever. His story reminds me every day that inclusion is not kindness—it’s justice. And justice delayed, as we know, is justice denied.

AFTER YOU READ:
1. Bruna says that “inclusion is not kindness—it’s justice.” What does she mean? What is the difference between kindness and justice?
2. Read the box on page 27. What do you think might be the similarities between the civil rights movement and the disability rights movement?
3. Look at the list of resources on p. 37 and click on the links to learn more about disability justice.

Bruna Almeida is a student at Dover Adult Learning Center in Dover, New Hampshire. She has a background in Social Sciences and previously researched youth-focused public policy in Brazil. In her free time, she finds joy and comfort in quiet moments with her two beloved cats.

Back to Issue 66

3 WAYS TO LISTEN

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2. Right-click here and “save as” or “save link as” to save an mp3 of the article to your computer (coming soon).
3. Listen to sections of the article by pressing the play buttons that appear before a set of words in the article below (coming soon).

Living With Fetal Alcohol Syndrome

Annette Bowen

BEFORE YOU READ:
What does fetal mean? What do you think Fetal Alcohol Syndrome is?

My Birth Mom Drank a Lot
To properly tell my story, let me take you back to the beginning. I was born with Fetal Alcohol Syndrome (FAS). My biological mom drank in excess while pregnant. Please allow me to give you a tutorial on FAS, the different spectrums of FAS, and what life is like living with Fetal Alcohol Syndrome.

FAS is a condition that develops in a fetus when a pregnant woman drinks alcohol during pregnancy. It is a lifelong condition that can’t be cured. Honestly, if there were a cure for FAS, I’d be first in line.

FAS is called a syndrome because a person with FAS can have a range of symptoms. Not everyone has the same symptoms or the same severity of symptoms.

My Symptoms Are Severe
I got diagnosed with a particular type of FAS. It is called Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE). This means I was exposed to more than a small amount of alcohol as a fetus.

As a toddler, I experienced shaking, excessive crying, trouble in school, and severe stuttering. I’ve had my ankles reset due to my feet turning outwards (slew foot). Thank goodness for my patient and loving parents who cared for me through all my challenges.

My adopted mother explained it to me as best she could when I was a little child. She told me my biological parents were abusive towards each other, which drove my birth mother deep into her bottles of alcohol. Since birth, I’ve had over 10 surgeries, mental health challenges, and learning disabilities.

And yet, here I am writing this article. How? Words make sense. It’s as if a switch flips on when I’m writing; the words flow from my mind to the page.

FAS Is Preventable
According to data from the Centers for Disease Control and Prevention (https://www.cdc.gov),

• 1 in 9 pregnant women consume alcohol and out of them, one-third report binge alcohol use.
• Tens of millions of children and adults have lifelong impairment from FAS.
• The cost of health care, disabilities services, special education, and related programs amount to $4 billion a year.

An article published in Movendi International, reports that “the USA is facing a crisis of fetal alcohol syndrome (FAS) with the rising level of addiction in the country.”

Despite this alarming data, you don’t see too many politicians making it a priority to educate the public about alcohol use during pregnancy. Instead of being named a public
health emergency, alcohol is a multi-billion dollar industry in the United States.

Educate and Advocate!
There is a bill that passed the House in June 2025. It is called the FASD Respect Act. FASD stands for Fetal Alcohol Spectrum Disorders. According to the advocacy organization FASD United, this bill would provide funding for FAS prevention, research, and treatment. You can make a difference by contacting your Senator. Tell them how you feel about the bill. It makes a difference when our elected officials hear from us!

Not a Victim
In spite of all the adversity I face, I will not be a victim. Writing keeps my mind focused on the present. It gives me an escape from my challenges and gives me a safe haven. In this case, I hope my writing will help others stay safe as well.

Keep your child safe! Don’t drink while pregnant. And do your part to keep everyone safe! Advocate for safer alcohol use!

Sources:

• https://movendi.ngo/policy-updates/2020/02/21/usa-the-crisis-of-fetal-alcohol-syndrome
• https://spiritsofamerica.org/notable-facts-figures/
• https://fasdunited.org/fasd-respect-act-of-2025-introduced-by-senators-murkowski-klobuchar/

AFTER YOU READ:
1. Look up the FASD Respect Act and follow Annette’s advice: contact your congressperson to tell them what you think.
2. Read about alcohol advertising on page 25. Collect some alcohol ads into a slideshow presentation and discuss how they might influence us.

Annette Bowen is a former student at Literacy Action, Inc., in Atlanta, Georgia. She’s a mother, grandmother and bona fide “Marvel movie nerd!!” Annette believes there’s a writer inside everyone. All you have to do is tap into yourself and allow the words to flow!!

Back to Issue 66

3 WAYS TO LISTEN

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3. Listen to sections of the article by pressing the play buttons that appear before a set of words in the article below (coming soon).

Taking Charge of My Learning

Alejandra Mendoza

BEFORE YOU READ:
What does it mean to “take charge” of your learning? In what ways have you taken charge of your learning?

My Journey with a Learning Disability
I was diagnosed with an intellectual disability at the age of four years old. My mom saw that I was not learning like other kids. I was not talking much, and when I did, it was hard to understand me. I did not play like other kids my age. I did not follow directions or pay attention when someone was talking to me. I would get frustrated when I could not say what I wanted. That’s when my mom knew something was different. She took me to the doctor and they did some tests. That’s how they found out I needed extra help.

Despite the circumstances, I am proud of how far I have come. As an adult who is working and attending school part time, it has been difficult to find a balance but I am making it work. Every step I take toward becoming a Teacher’s Aide or Early Childhood Educator makes me feel stronger and helps me believe that I can reach my goals.

Me as a Learner
I learn in my own way. For example, I do my best when someone explains things step by step because it helps me stay focused. I also like having extra time and doing hands-on activities because it makes learning more fun and helps me stay engaged. When my teachers take the time to teach me in a way that works for me, I feel more confident.

My school has supported me in different ways. I have an Individualized Education Plan (IEP), which is a learning plan for students with disabilities. The IEP helps me with my learning needs, and I get more time on tests and assignments. In the classroom, my teachers explain things clearly and give me directions I can follow.

However, not all experiences were helpful. Some teachers did not know how to help when I struggled, or they moved too fast during lessons, which made it hard for me to keep up.

My teacher from high school would always help me when I needed it on my assignments or tests. She would take the time to explain things to me in a way I could understand. That really helped me feel more confident.

As a teacher’s assistant currently working at a daycare, that is something I strive to do for my own students. If I see students who need help, I will give them extra time to turn in their work so they don’t feel rushed. I will also sit with them and go over the assignment step by step. I will explain it in a way that makes sense to them and make sure they feel supported, just like my teacher did for me.

Me as a Human Being
Having a disability has made me a stronger person. I have learned to keep going even when things are hard. I know how to ask for help, and I have learned to be more patient with myself and others. I cheer for people when they do something good, and I try to be kind and understanding. I feel proud of how far I have come. My disability does not stop me; it makes me who I am. Being around others with disabilities helps me feel less alone. We support each other, help each other when we struggle, and understand each other better. I like knowing I am not the only one who learns differently from others.

Advocating for Myself and Others
I speak up when I need help in class. I tell my teachers what helps me learn. I ask for breaks when I feel stressed or need time to think. I try to tell people that learning differently is okay. I want people to understand and be kind to others like me. I just want to make school better for people with learning disabilities. I tell teachers and staff when something is not working for me. I share my ideas in class or meetings.

Sometimes I help other students who also learn differently. I remind people that we all learn in our own way. I try to be a voice for others who might be shy or scared to speak up. I want to make sure we all feel safe, happy, and supported at school.

AFTER YOU READ:
1. Name some key strategies that have made a difference for Alejandra.
2. How does Alejandra’s experience with learning differences inform her work as a teacher’s assistant?
3. Read the box on the right and look up some of the articles in Issue #65 of The Change Agent.

Alejandra Mendoza is a student at Ysleta Community Learning Center in El Paso, Texas. She currently works at a daycare as a teacher and enjoys working with children. She aspires to enroll in college and earn a degree in Early Childhood Education.

Back to Issue 66

3 WAYS TO LISTEN

1. Click the icon on the right to listen to the full article (coming soon).
2. Right-click here and “save as” or “save link as” to save an mp3 of the article to your computer (coming soon).
3. Listen to sections of the article by pressing the play buttons that appear before a set of words in the article below (coming soon).

I Am My Child’s Advocate

Alma R. Sandoval Garcia

BEFORE YOU READ:
1. What does it mean to be your child’s advocate? Describe a time you advocated for your child.
2. In English, we have an idiom: “Before you judge someone, walk a mile in their shoes.” Discuss what this means and try using it in various contexts.

My Son Faces Many Difficulties
Being a mother is a hard job, and being mother of a child with disabilities is harder. I became a single mother when I was 17.

My son was born with hearing problems. He is not 100% deaf, but almost. He wears hearing aids. All his education has been in American Sign Language (ASL). But he still had problems. At the age of 9, my son was diagnosed with learning disabilities. And at the age of 11, he was diagnosed with a mild intellectual developmental disorder and attention deficit hyperactivity disorder (ADHD). I felt so bad and sad. I knew this would mean my son would face many difficulties in life.

It Took Many Meetings to Get Him the Help He Needs
Moms, dads, and legal guardians of children with disabilities are their first (and sometimes only) advocates. I always had hard moments in his school. The IEP (individual education plan) wasn’t working for him. I found out that my son wasn’t receiving speech therapy, even though the IEP required it. I went to the Department of Education to complain. After many meetings, and a lot of back and forth, they finally started to provide the speech therapy that he was supposed to have been receiving for several years.

Walking in My Child’s Shoes
I loved to help my son with his learning. I read books to him and made games for him. We had flash cards and a white board with markers, and we counted everything around the house. Instead of going out or watching TV, I wanted to invest my free time to help my son.

Over time, I learned a lot about his disabilities and how to help him. For example, he doesn’t do well when he is around a lot of people. Now, he knows what to do in those situations. It took years for both of us to know what is good for him and what is not. It is important to walk in your child’s shoes. You must try to understand your child, no matter what age they are, so that you can support them.

An Accident, A Change of Plans
When my son was about to graduate from high school, he got in an accident during his welding class. A big metal table fell down on his left toe. He had an emergency surgery that day, and his toe was amputated. I felt so horrible for him, but he felt worse. He told me that on the day of the accident, he was about to tell me his plans for the future. He wanted to become an underwater welder, and he knew he could do it. After the accident though, his plans changed.

Momma to the Rescue!
He graduated with a modified high school diploma, and now he is working at Walmart as a stocker. I encouraged him to go to college, but he rejected my suggestion. I couldn’t convince him.

But wait! Momma to the rescue! I went to the college and asked for some information. I made an appointment for him and got him there. Now, he is convinced that he can have a better job by getting a certificate or degree. They explained to him all his legal rights as a student with disabilities in college and how college works. Once he starts classes, he will have an ASL interpreter for all his classes. Soon, he will start classes at community college.

If you have a disabled child, spend time with your child to discover his interests. Encourage him, speak up for him, and encourage him to speak up for himself. Don’t just be present; be in his shoes. Your child needs you to help him with his future. “Give him the spoon, and let him measure the sugar.”

AFTER YOU READ:
1. What challenges did Alma face, and how did she overcome them? Cite passages from the text to back up your answer.
2. Look up Issue 65 of The Change Agent and read more by parents who have advocated for their children with disabilities.

Alma R. Sandoval Garcia is from Mexico. She has been in the United States for 20 years. She is an ESOL student at Chemeketa Community College. She is a single mom of two kids. In the future, she plans to study medical assisting, and move to North Carolina with her family.

Back to Issue 66