Plain Language uses:
We wrote this version so more people could read the book.
There are two parts to this translation:
Who made this?
You can buy the printed, digital, and audio versions of Emily’s book by clicking here.
Before we begin, here are notes for people who use screen reading software. Screen reading software reads text on a screen out loud.
Contents
Introduction 49
Chapter 1: So What is Disability, Anyways? 55
Chapter 2: Understanding Disability as Part of the Whole Person 80
Chapter 3: An (Incomplete) Overview of Disability History 97
Chapter 4: Ableism and Accessibility 123
Chapter 5: Disability Etiquette 101 140
Chapter 6: Disability in the Media 169
Conclusion 190
Read the Plain Language Introduction
No one is “normal.” We all have different ways of:
Read the Plain Language Chapter 1
Read the Plain Language Chapter 2
Read the Plain Language Chapter 3
Read the Plain Language Chapter 4
Read the Plain Language Chapter 5
Read the Plain Language Chapter 6
Read the Plain Language Conclusion
One billion. That’s how many disabled people are in the world. We are the world’s largest minority.
That means you probably know someone is disabled. You might be disabled yourself. So, you can probably use the information in this book. Have you ever:
Don’t worry! I’m not here to judge. You can use this book to find answers to some questions about disability that you aren’t sure how to ask.
The word disability makes some people afraid or confused. Many people don’t even know they think bad things about disability.
We have to do a lot of work to change how people think about disability. Nondisabled people treat disabled people in weird ways. Sometimes, they act like we’re precious gems. Sometimes they act like we’re aliens.
I am a disabled person. And I care about helping people change how they think about disability.
Here is a little about me:
I have more than one disability. I have:
We’ll explain what those disabilities are in Chapter 3.
I use a wheelchair. I was born with a disability called Larsen syndrome (LS). It affects my muscles and joints. My mom Ellen also has the same disability. I have LS because she has it.
You might think it’s sad that we both have LS. We don’t. I think it’s great that my mom and I share this experience. She understands what my life is like.
My mom didn’t always think it was great. She and my dad, Marc, went to a medical expert before they had me. The doctor said I wouldn’t have LS.
But they found out I had LS when my mom was pregnant. My mom felt sad and worried. She thought I would blame her for giving me her disability. I don’t feel that way at all. But I know why she was worried. The world was not very respectful of disabled people when she was a kid. It is better now, but still not perfect.
When I was a baby, a woman saw that my mom and I have disabilities. My mom heard her say, “Look what that mom did to her baby.” That woman’s rude comment still hurts our feelings.
Society accepts and understands disability more now. But we all have more to learn. That is how we will make the world more accessible and inclusive.
Accessibility means that:
can be used by disabled people.
Inclusive means everyone is welcome.
How do we make the world accessible and inclusive? ?
This is the way I think about it:
This means disabled people need to share our stories. How can people understand disability if we don’t tell them about it?
Some disabled people don’t agree with me about sharing stories. It is a lot of work to teach other people about your life. It can be hard. Sometimes people won’t listen. We don’t want to always be teaching other people. We want to live our lives.
But right now,I still see many things that hurt disabled people online and in real life. So I think we need to be honest about disability. We need to share tips and advice. It is how we will move forward.
Someone who reads this book might change how they act. They could:
All these changes can help make the world better for people with disabilities.
This book is for everyone. That includes disabled and nondisabled people. You can learn from it. You can become a better ally. An ally is a person who supports a group they are not a part of. Nondisabled people can be allies to disabled people. Disabled people can be allies to people with different disabilities.
This is not a textbook. I won’t cover everything about disability. And I am not a professor. I won’t give you a test about the book. Reading this book isn’t like taking a class that you can fail.
I hope you will take what you learn from this book and use it in your daily life. But you don’t have to do everything right on the first try. It’s okay if you get your language about disability wrong. It’s okay if you watch a movie and aren’t sure if it shows disability in a good way.
Some people think just being nice to disabled people makes them a good person. Including and supporting disabled people doesn’t make you a good person. Don’t read this book just to make yourself feel good about being nice to disabled people.
Learning about people who are different from you takes time. Don’t be too hard on yourself.
When talking about people with disabilities in this book, I will say the “disability community.” We are a beautiful and diverse community. Diverse means we are not all the same. This book does not represent every single person with a disability. We are each our own person. We have our own thoughts. Even people with the same disability have different experiences.
My family is a perfect example. My mom and my Uncle Jonathan have the same disability that I do. Our bodies are alike in a lot of ways:
But we are different too.
We are in the same family. We have the same disability. But our lives are different.
Remember: meeting one disabled person means you’ve met one disabled person. If you have a disability, you are only the expert about your own life.
The same is true for this book. It is just one book about disability. It is my goal to share many ideas and experiences about disability. But the book is written by me. I am a person with a physical disability. People can tell I am disabled when they meet me. This affects how I look at and experience the world.
There is a lot more wisdom about disability out there. This may be the first book about disability you have ever read. It may be the 100th book about disability you have read. But you can always learn more. Keep reading. Keep learning. Keep going.
Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It’s an ingenious way to live.
-Neil Marcus, actor and playwright
Disability. How does that word make you feel? What does that word make you think of? And what does it mean, anyway?
My mom says to look in the dictionary when I don’t know how to begin explaining something. Here’s what the dictionary says:
dis· abil· i· ty | \ ,dis--’bi-l-tē \ 1: a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.
There are laws that talk about disability too. Here’s how the Americans with Disabilities Act talks about it:
The term “disability” means, with respect to an individual,
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment.
These definitions say disability means that your body or mind is not able to do something. But this is only one way to think about disability.
So, how do I define disability?
Disability: a state of being; a natural part of the human experience.
But I’m just one person. I asked other disabled people to share what disability means to them. Their words will be in “quotation marks.” I will explain what they mean below. Here’s what they said:
Ellen Ladau, my mom:
Cara Liebowitz, writer and activist:
Imani Barbarin, writer and activist:
Jaipreet Virdi, assistant professor, University of Delaware:
Lawrence Carter-Long, author, artist, and disability media enthusiast:
Liz Weintraub, senior disability advocacy specialist:
As you can tell, disability means many things to different people. It changes. It is a part of being human.
“One size fits all” is a myth. There is not one kind of clothing that will fit everyone.
There’s also not one right way to talk about disability. But we need to think about the words we use.
How we talk shapes how we think. How we think shapes how we talk. That can be confusing. Whew!
How we talk about ourselves is personal. How someone talks about their own disability is their choice. We all need to respect that choice. Even if you have a disability too. Even if their choice is different from yours.
Keep that in mind. Now, let’s talk about how to talk about disability.
First: Stop using the word handicapped. It’s an old word. Many disabled people don’t like it. It makes me uncomfortable. But old habits are hard to change. Sometimes I still say things like:
But there are better words to use:
In this book, I use two different terms:
Using both terms honors two ways of talking about disability. Those ways are:
Person-first language does just what it says. It puts the word “person” before the disability. Some examples are:
Using person-first language shows that a disability is something a person has. It does not define who they are. It is about making sure people are not seen just for their disability. It is meant to be respectful.
Identity-first language says a person’s disability is part of who they are. Some examples are:
In identity-first language, disability is not just something you have. It is part of what makes you who you are. It is about community, culture, and history.
Neither choice is wrong. But many people like one type of language more than the other. I like identity-first language because disability is absolutely part of who I am.
I didn’t always know about the different types of language. I started thinking about what to call myself during a college class about special education. The teacher thought person-first language was the only right way to talk about disability. He wanted me to agree with him. I said that I did agree. But it made me uncomfortable.
People use person-first language to remind others that disability doesn’t make you less than anyone else. It has been important for disability rights.
I have a hard time with person-first language. I don’t think mentioning someone’s disability means you are saying they are not a person.
Person-first language is not how we talk about other identities.
It makes sense. Those are identities. They are part of what makes a person whole.
I used to talk a lot about identity-first language. I couldn’t understand why anyone would want to use person-first language. I pushed against it whenever I had the chance.
But then I realized something. I didn’t dislike people with disabilities who used person-first language. I think everyone should use the language that feels right to them.
What I didn’t like was when nondisabled people told me person-first language was right and identity-first language was wrong.
I would call myself a “disabled person” and people would tell me:
Hearing people say that made me feel bad. It was like a whole part of who I am was being erased. I know people don’t say these things to be mean. But it doesn’t feel good that they have to ignore my disability to think about me as a human.
I still like using identity-first language. But now I know that I don’t like being told what to call myself. So I shouldn’t tell other people what to call themselves.
There is no right or wrong personal choice about identity-first language and person-first language. But there are some important things to know:
Phew! It’s okay if this feels like a lot to take in. It’s totally normal to worry that you’ll mess up what to say. If you get it wrong, just:
You’ll learn over time!
I say what I mean. I don’t like when people use euphemisms. That’s when they use gentle words to talk about something they think is bad. Instead of saying “disabled” they’ll say things like:
You might have said these things. You might have thought it was respectful. Why?
I get it. We’ve been taught that disability is a bad thing. But you should say what you mean. A lot of disabled people think that. Not saying the word disabled doesn’t mean my disability goes away. Neither does writing it like this:
But it’s still about respecting people and the word choices. Kayla McKeon is an advocate with Down syndrome. She calls herself “differently abled.” She says:
I respect McKeon’s choice even though I call myself disabled.
What I really don’t like is when nondisabled people make up their own words.
I’ve heard them all. I wish people would stop doing this. Call me what I am. I am disabled.
Ask people what they want to be called. It’s that easy. You can say:
If you can’t ask the person, just say “disabled!” It’s not a bad word, I promise!
These are examples of euphemisms. People are usually trying to be nice when they say them. But they don’t work well. They don’t mean what people think they mean.
No one is exactly the same. Some people can:
Everyone is differently abled. Not just disabled people.
Does anyone seriously use this? Please don’t.
It’s true that some things are hard to do for people with disabilities. But the reason things are hard is not always because of disabilities. Things can also be hard because of:
These challenges aren’t about our bodies or minds.
Why are the needs of people with disabilities “special?” Everyone has needs. No one has their needs met in exactly the same way.
People sometimes say this about students with disabilities. It describes someone who is really good at some things and needs help with other things. But it doesn’t make sense. Everyone is good at some things and not at others. That’s not exceptional. That’s human.
I have a question for you. What does “normal” mean? Can you think of anyone you know who you would call normal?
If you said “yes,” think again. We all have different ways of:
That means we all need help to get things done.
But many of us get stuck on labels. We have an idea of “normal.” We stick labels on anyone who doesn’t fit that idea. That’s how we got functioning labels.
Disabled people sometimes get called high functioning or low functioning. This happens a lot at school or with doctors.
I’ve been called high functioning. That’s because I can write and speak. This label is not a compliment. It makes it seem like I’m better than people who don’t write or speak.
Noor Pervez is an Autistic advocate. He told me why functioning labels are wrong and hurt people. Pervez said:
“‘Low functioning’ is used to deny agency to disabled people who have high support needs, while ‘high functioning’ is used to deny resources to people who can mask their disability well. Any person’s support needs can shift from year to year, or even day to day, making ‘functioning’ a flawed concept.”
I think we should stop using functioning labels. They are based on the idea that all people should do the same things or act the same way. They split people into categories. They judge people by what they can and can’t do. I don’t think we should do that.
It is better to talk about needs, abilities, and disabilities. For example:
Instead of saying a student is “low-functioning,” say what help they need.
You don’t need to put a hurtful label on that student. Use clear language. It is simple and respectful.
Most of us have said things like:
These words are ableist. They make disability seem like a bad thing.
Words have histories. Some words may have been okay in the past but are not okay now. Some words were always hurtful. Some hurtful words about disability are:
It can be hard to stop using these words. I say these words sometimes. I can’t take them back after I say them. But I can try to stop saying them in the future. We all can. We can practice using other words instead.
We also use disability words to talk about feelings or situations. You’ve probably heard these before.
Imagine two people are talking about their friend. Their friend is trying to ask someone on a date. One person says:
In this conversation, they don’t mean their friend is deaf, blind, or paralyzed. They are using disability as a metaphor. This means they are using words that describe disabilities, but they are really talking about something else. They could have the same conversation without those words:
See? All it takes are little changes to make sure you are not using hurtful language.
Disability is not an insult. Do not use disability as an insult. I hear people say things like:
They use diagnoses as insults. It’s not okay. It hurts people. If you are going to insult someone, use a different word. But it’s better if we’re kind to each other instead of using any insulting words.
Some words aren’t just insults: they’re slurs. A slur is a very offensive word. Here are some examples:
Sometimes people “reclaim” slurs. That means they decide to use words that other people have used to hurt them or people like them in the past. Some people say this helps them “take back power” so now they are in control of how that word gets used.
I do this. My mom and I joke about being “cripples.” We use that word with each other. People close to us might use it too.
But it is not okay for nondisabled people to use “crippled” to mean “disabled.”
You might know a disabled person who calls themselves “crippled.” You can only use that word if they say it’s okay. And you can only use it with them, not with all disabled people.
It’s never okay to force disabled people to use words they don’t want to use. If you’re not sure if a word is offensive, pick a different word.
Always ask a person what words are right for them. But you can use this table as a guide.
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Disability must be considered within an intersectional framework because it cuts across political, social, and cultural narratives and identities. An intersectional lens challenges the historically white, cisgender, heterosexual understanding of disability to more accurately reflect the narratives as told by lived experiences of disabled people.
-Sandy Ho, Community Organizer
I have a lot of different feelings about disability:
But I’m disabled. It’s part of me.
Anyone can become disabled at any time. That’s not a bad thing. Disabled people are pretty cool, in my opinion. Disability is personal. It means something different to everyone:
Each person gets to choose for themselves.
Imagine you are a pizza. All pizzas have crusts. That’s what they have in common.
But there are many different toppings for pizzas. And no two slices of pizza are the same, even if they have the same toppings.
That’s how people are too. We all have something in common. We’re human. But we have things that make us unique too.
What disability means to someone depends on who they are. Some things that matter are:
Intersectionality was first used by Dr. Kimberlé Crenshaw in 1989. She used the word to talk about what it was like to be Black and be a woman. She said that Black women are:
Those two parts of who they are intersect. You can’t think about one without thinking about the other.
Many social justice activists think about the importance of intersectionality. We use it to talk about the different parts of who we are. That might be our:
These things are sometimes called identities.
Disability intersects with all other identities. That means that anyone can be disabled. We need to listen most to people who are marginalized. That’s someone who is treated unfairly because of who they are. Some people are treated unfairly for more than one identity.
How your identities overlap with disability changes how people treat you. For example, I am:
My life is different from a disabled person who is:
I don’t have those identities. The identities that I do have mean that I am what many people think about when they think of disability. I look like what people assume disabled people look like.
This means I have privilege. Privilege is having an advantage over someone with a different marginalized identity. For example:
Crystal R. Emery is a filmmaker and writer. She wrote an article for Time in 2016. She said,
“As an African American female with a disability, a wheelchair-riding quadriplegic, I exist as a triple threat to our society’s normative conceptions (white, male, able-bodied). …My gender, race, and disability all contribute to the ways in which I obtain and maintain power—not through my intersectional identity but through my search to become human in ways not easily codified. In spite of my reimagined relationship with these identity markers, the world has a lot to catch up on.”
So how do we catch up? How do we stop thinking all the wrong ideas we have about disability? About disabled people who are marginalized in other ways? How do we make a more inclusive, accepting world?
We have to think about our privileges. We have to think about the wrong ideas we have about others. We all need to do this.
D’Arcee Neal is a student getting a doctoral degree. He reminded me that disabled people can treat people unfairly too. He said, “being part of one marginalized community doesn’t absolve you from understanding discrimination toward marginalized people whose experiences are different than your own.”
Neal said he can only speak based on his experience. He is:
He told me “People need to recognize that being Black means you’re perceived as being criminal, whether you have a disability or not.”
“When I tell people I have cerebral palsy, they’re surprised because that’s not the first association they made with why I’m a wheelchair user. When I was younger, the very first question most white people would ask upon meeting me was ‘When were you shot?’ They immediately jumped to the conclusion that I had a spinal cord injury as a result of gang or gun violence.”
People assume Neal’s life is hard because of how he looks. Someone once told him, “I would kill myself if I were you.”
(Don’t ever say this to a disabled person. Ever.)
Neal said, “He told me that my life is too difficult.”
Neal never spoke to the person who said this to him again. That person judged Neal. He assumed things about his life because of Neal’s identities.
Neal does have hard things in his life. But it’s not because of who he is. It’s because of how people treat him.
Neal shows us that not all people with disabilities have the same lives. We need to remember that as we think more about disability.
There are many kinds of disabilities. Some disabilities fit in more than one category. Some people have more than one disability. Two people with the same disability can have different experiences.
Here is a list of common types of disabilities:
You can learn more about different types of disabilities by looking at the information in the Further Reading and Resources section of the book.
You may think all disabled people look a certain way. Movies and TV often show disabled people who all look the same. (We will talk more about that in Chapter 6.) But disabled people do not all look the same.
Some disabilities do look a certain way. But you can’t assume if a person has a disability from how they look. You can’t see some disabilities at all.
No disability is more “real” than any other type. My disability is visible. That doesn’t mean my disability matters more. No disability makes anyone less of a person either. Having a disability that impacts you more than someone else doesn’t make you worth less than anyone else.
Nondisabled people can be scared of getting a disability. I understand that. They are scared because they don’t know what it’s like to have a disability. But those fears can make them treat disabled people badly. That’s why we need to talk about disability more. It helps people understand disability and be less afraid of it.
Models are ways of thinking about disability. They have to do with who we are and the world around us. They help explain what disability means. Let’s start by talking about the two most common models of disability: the medical model and the social model.
Part of the medical model of disability makes sense. For example, I have a disability called Larsen syndrome. Having this disability affects who I am and how I move around the world. It affects my muscles and joints. It means I can’t do certain things. It causes my body to be in pain.
Both models of disability can be right. I use them to think myself and my disability:
There are lots of other ways to think about disability. Here are a few:
Models of disability can help us understand disability. Some of these models say things about disability that are wrong or hurtful. Some say more positive things. But no model of disability is completely right. Disability means many things. We need to think about it in more than one way.
“As ‘invisibles,’ our history is hidden from us, our heroes buried in the pages, unnamed, unrecognized. Disability culture is about naming, about recognizing.”
-Cheryl Marie Wade, “Disability Culture Rap”
Think about all the history classes you’ve taken. I bet they did not talk about disability. We didn’t talk about disability history when I went to school.
Some famous people from history had disabilities.
Have you heard of people named:
These people are important to disability history. You’ll learn about them in this chapter.
Only a few states have laws that say schools have to teach disability history. The first state to do this was Virginia. Young disabled advocates helped pass this law.
Disability history touches all people and places. It shouldn’t be a special subject.
The disability community has a long history. For example:
I can’t write about all of disability history in this chapter. I will focus on things that:
These are events that matter to me as a disabled person. I hope you’ll want to learn more.
The early 1900s were not a good time for disabled people. A lot of people thought disabled people should not exist.
There were new laws written about this. Indiana passed a law in 1907 that said disabled people should be sterilized. This means they were forced to have surgery that stopped them from having babies. More than half of the states in the US made laws about sterilizing disabled people.
This is called eugenics. Eugenics means thinking the world would be better if only certain types of people lived in it. This belief is based on people thinking that some types of people are good and some are bad. For example, people who believe in eugenics think people with disabilities should not have children, because they believe that having a disability is bad.
The people who believed in eugenics were:
They thought society would be better if only people who were like them had babies.
Carrie Buck was a teenager in Virginia in 1927. She lived in an institution. An institution is a big building where many people live together away from their families. Nursing homes are examples of institutions. She was put there because she had a baby when she wasn’t married. Her mother also had a baby before she was married.
Doctors decided Buck shouldn’t have more babies. They wanted to sterilize her. Buck did not want to be sterilized.
Buck went to the U.S. Supreme Court to fight being sterilized. The Supreme Court judges decided that some people could be sterilized even if they don’t want it. They said this did not break the law. Oliver Wendell Holmes Jr. was a judge on the court. He wrote that, “Three generations of imbeciles are enough.”
He meant that it was a good thing to sterilize Buck. He didn’t want more children with disabilities in the US. This is eugenics.
Franklin Delano Roosevelt (FDR) became president in 1932. He is the only president who had a visible physical disability.
He usually hid his disability in public. He worried people wouldn’t want a leader with a disability.
Many people know about FDR’s disability now. There is a statue of FDR using a wheelchair in Washington, DC.
FDR was president during the Great Depression. Not many disabled people had success like FDR. It was hard to get a job at this time. Many people couldn’t pay for what they needed to live. Almost no disabled people had jobs.
The government made programs to help people find work. Disabled people were not treated fairly by these programs. Some disabled people decided to protest the unfair treatment. That means they fought back. They formed the League of the Physically Handicapped. This is one of the oldest disability rights groups.
Several laws that impact people with disabilities were passed in the 1930s:
World War Two started in the 1940s. The war created many new jobs for American people. This meant more people had money to live. But disabled people were still not treated fairly.
Many soldiers were hurt during the war. There were more disabled veterans coming home. The U.S. passed a law called the Disabled Veterans Rehabilitation Act in 1943. It helped disabled veterans find jobs.
The first “National Employ the Physically Handicapped Week” was in 1945. President Harry S. Truman said employers need “to exercise every appropriate effort to enlist public support of a sustained program for the employment and development of the abilities and capacities of those who are physically handicapped.”
The name of this week became “National Disability Employment Awareness Month.” It now happens every October. It celebrates the talents people with disabilities bring to their jobs.
Other disability groups started during the 1940s.
The war affected the mental health of many veterans. The U.S. passed the National Mental Health Act of 1946 to try to make mental health care better.
President Dwight D. Eisenhower updated laws in the 1950s. These changes meant new support for people with disabilities.
Some conservative politicians don’t like SSDI. They think people who get cash from the government won’t want to work. This is an ableist way to think. Progressives say SSDI is important. People use it to pay for what they need to live.
President John F. Kennedy made laws to protect the rights of people with intellectual and developmental disabilities in the 1960s.
He signed the Mental Retardation and Community Mental Health Centers Construction Act. It is also called the Community Mental Health Act (CMHA). This law creates places for people to get care in their community.
President Kennedy’s sister founded the Special Olympics in 1968. The Special Olympics is a sports organization for athletes with intellectual and developmental disabilities.
Loretta Claiborne is a Special Olympics athlete. She has an intellectual disability. She told me the Special Olympics changed her life. She used to be bullied and got into fights. Now she shows people what she can do. She is helping change attitudes about disabilities.
The Architectural Barriers Act was passed in 1968. It was the first law that said some buildings need to be accessible.
Many important disability rights events happened in the 1970s.
Disability activist Judith Heumann sued the New York City Board of Education. She was 22 years old and trying to be a teacher. She was not allowed to teach because she used a wheelchair. Heumann fought against this. And she won.
A reporter named Geraldo Rivera did a news story on Willowbrook State School in New York. Willowbrook was an institution for disabled people. Willowbrook treated the people who lived there horribly. The building was not clean. People did not have food or clothes. Most people watching did not know about Willowbrook. The story about Willowbrook became a scandal. But Willowbrook stayed open until 1987. Many disabled people still live in institutions.
The Rehabilitation Act was passed. It did many things, such as:
The last “Ugly Law” was ended. Ugly Laws is the name for laws that were created to stop people from begging for money in the streets. They said people who were begging did not look like they should be allowed to be in public. This law affected a lot of people with visible disabilities.
The Education for All Handicapped Children Act was passed. It said all disabled kids have the right to go to school. This law is now called the Individuals with Disabilities Education Act. It is a good law, but more work needs to be done to make the law better.
Even with all this progress, there were still problems. The Rehabilitation Act had passed in 1973. Section 504 of this law said people with disabilities could not be discriminated against. Discriminate means to treat unfairly. But there were still no rules about how to use this law in 1977. It was up to a government office called the Department of Health, Education, and Welfare (HEW) to create these rules.
Disability activists were tired of waiting for the rules to be made. They started protests on April 5, 1977. Disabled people began sit-ins at HEW offices around the country. This means they protested by refusing to leave the offices until the government listened to them. The longest protest was in San Francisco. It lasted almost 30 days. That is the longest sit-in in U.S. history. It is called the 504 Sit-In.
The 504 Sit-In brought many people together. One group that helped during the protest was the Black Panthers. The Black Panthers connected with the disability activists doing the sit-in through a man named Bradley Lomax. He was a disabled Black Panther and disability activist. The Black Panthers did many things, including bring food to the 504 Sit-In.
Some of the activists went to Washington, DC to continue their fight. Finally, the rules for Section 504 were signed on April 28.
Judith Heumann wrote, “The public was stunned. People weren’t used to thinking of us as fighters—when they thought about us as all...We were a people who were generally invisible in the daily life of society.”
Wade Blank helped 19 young disabled people escape from their nursing home in Denver, Colorado. They found ways to live in their community instead. This group was known as the “Gang of 19.” They held a protest in 1978. They wanted buses that wheelchair users could ride. They inspired a future for disability activism.
The Gang of 19 became a group called American Disabled for Attendant Programs Today (ADAPT) in 1983. Anita Cameron is a member of ADAPT. She has been arrested more than 130 times while protesting for disability rights. She said, “If you’re messing with our civil rights, you’re going to hear from ADAPT.”
The Paralympic Games came to the US in 1984. The Paralympics are a sports event for disabled athletes from all over the world.
Two important laws passed in the 1980s:
These laws are not always followed. For example:
There were more fights for rights in the 1980s. One took place at Gallaudet University. Gallaudet is a school for d/Deaf and hard of hearing students. A hearing person became president of the university in 1988. The students had a protest called Deaf President Now (DPN). They did not want a hearing person leading a university for people with hearing disabilities. Greg Hilbok was one of the leaders of the protest. He told me: “It started as a campus issue where deaf individuals made their assertion known that a deaf person is fully capable of being a college president. It led to an explosion of awareness on accessibility and our language, American Sign Language, and created ripple effects that are part of a worldwide civil rights movement.”
The Americans with Disabilities Act (ADA) was ready to be signed in 1990. Many people had helped make this happen, including:
Justin Dart, Jr. is known as the Father of the ADA. He and Yoshiko spoke to disabled people around the U.S. They learned about what issues mattered most. They used those conversations to help create the ADA.
The ADA had a problem passing through the House of Representatives. Protesters came to DC in March 1990. A group of disabled people climbed the US Capitol Steps without their mobility aids. They wanted to make a point about the barriers they faced. This event is called the “Capitol Crawl.”
ADAPT activist Anita Cameron was there. She gave an interview to New Mobility magazine about it. She said, “I felt that we were crawling our way into the history books.”
Jennifer Keelan-Chaffins was there too. She was 8 years old at the time. She was one of the first protestors to climb the steps. She yelled, “I’ll take all night if I have to.”
I have watched a video of Keelan-Chaffins climbing the steps many times. It makes me feel proud.
Keelan-Chaffins founded JKCLegacy.com and wrote a children’s book. It’s called All the Way to the Top: How One Girl’s Fight for Americans with Disabilities Changed Everything. She told me, “As a young child who got to be involved so closely in this movement, I realized I had a great responsibility not just to represent myself but also to represent my generation, and future generations of people with disabilities.”
The ADA passed a few months later. President George H.W. Bush signed it into law on July 26, 1990. Justin Dart, Jr. was with him. President Bush said, “Let the shameful wall of exclusion finally come tumbling down.”
I was born 1 year and 3 days after the ADA was signed. I feel lucky that I was born after all this disability activism. But there is still work to do to make the world better for people with disabilities.
In 1999, the Supreme Court heard a case about disabled people living in institutions. It is called the Olmstead decision. It was a case about two women:
Elaine and Lois lived in institutions. The Supreme Court said disabled people have the right to live in the community instead of institutions.
One of the Supreme Court judges, Ruth Bader Ginsburg, wrote that forcing disabled people to live in institutions “perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.”
A lot has happened between 2000 and 2020. Here are some important events:
Vermont is the first state to close sheltered workshops. Sheltered workshops are places where only disabled people work. Often they make less money than nondisabled people.
Ari Ne’eman and Scott Michael Robertson found the Autistic Self Advocacy Network. It is an organization run by and for Autistic people.
President Barack Obama signs the Twenty-First Century Communications and Video Accessibility Act into law. This law means more technology is accessible for people with disabilities.
The United Nations declares March 21 World Down Syndrome Day.
Tammy Duckworth is elected to the U.S. Senate. She is the first woman with a visible disability to become a senator.
The U.S. does not sign the Convention on the Rights of Persons with Disabilities. It has been signed by 126 other countries.
Jenny Hatch wins a court case against her parents. Jenny has Down syndrome. She wanted to live in the community. Her parents wanted her to live in a group home.
The Achieving a Better Life Experience (ABLE) Act passes. This law lets disabled people save money. Before ABLE, people with disabilities could lose their benefits if they had too much money.
Leah Katz-Hernandez becomes the first deaf receptionist in the White House.
The ADA Education and Reform Act is proposed. It would make it harder to protect people under the ADA. It has not been made into law.
Disabled activists protest in Congress. They stop the Senate from taking money away from Medicaid.
Ali Stroker wins a Tony Award for her role in the Broadway show Oklahoma! She is the first wheelchair user to win this award.
The COVID-19 pandemic begins. Doctors and politicians talk about not giving disabled people healthcare to treat COVID-19. Disabled people fight for our lives.
There isn’t one big “disability community.” We don’t always have the same goals. There are many groups. It is called “cross-disability” work when these groups work together.
I can’t write about every group of disabled people. But it is important to know that we are not all the same. We have different experiences and different fights for our rights. Below are some of the biggest movements led by people with disabilities.
This movement was started by Ed Roberts. Roberts was the first wheelchair user to go to University of California, Berkeley. Roberts and other disabled students worked together as a group. They called themselves “the Rolling Quads.” They formed the Physically Disabled Students’ Program. They supported disabled students and pushed for accessibility.
This group became the Berkeley Center for Independent Living in 1972.
Centers for Independent Living (CILs) are organizations that advocate for disabled people to have the support they need to live in their community instead of institutions or nursing homes. There are now many CILs in the U.S. and around the world.
Roberts was interviewed on a television news show called 60 Minutes in 1989. He said, “What’s a life living in an institution or nursing home? Not much of a life. Yet we spend billions and billions of dollars on these. What we have to do is break that money loose from very strong special interests and move it into the community and deal with quality-of-life issues. We do not want to be segregated.”
That is what the Independent Living (IL) movement is all about. Disabled people should be able to live in their community.
The IL movement is important to me. It’s how I became an advocate. I interned at my local CIL. I sat on the board of the National Council on Independent Living.
But the IL movement is not perfect. It has mostly been led by white people. It focuses mostly on physical disability. It needs to change to welcome everyone.
The people with the most privilege have been at the center of disability rights. That means some people have been left out. That includes people who are disabled and have other marginalized identities. That might have to do with their:
Activists created disability justice to include people who are left out of disability advocacy work.
Disability rights and Disability Justice are not the same thing.
The group Sins Invalid wrote a book called Skin, Tooth, and Bone: The Basis of Movement is Our People to explain Disability Justice. It says:
“While a concrete and radical move forward toward justice for disabled people, the Disability Rights Movement simultaneously invisibilized the lives of disabled people of color, immigrants with disabilities, disabled people who practice marginalized religions (in particular those experiencing the violence of anti-Islamic beliefs and actions), queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, among others.”
Disability Justice helps me think about my privilege as a straight white woman. I can support marginalized disabled people. Not all disability experiences are the same. That is a main idea for Disability Justice.
Mia Mingus is a writer and organizer. She wrote that Disability Justice is about “moving away from an equality-based model of sameness and ‘we are just like you’ to a model of disability that embraces difference, confronts privilege, and challenges what is considered ‘normal’ on every front.”
People with intellectual and developmental disabilities (I/DD) have been treated badly by society. Many people think that people with I/DD can’t or shouldn’t decide what they want in life. People with I/DD are treated like they aren’t worth as much as others. This belief is wrong.
The self-advocacy movement fights back against this idea.
A small group of people with I/DD formed People First in Oregon in 1974. It was named People First to remind others that people are not only defined by their disabilities. It grew into a movement. Self-advocates say people with disabilities should live in their communities.
Roland Johnson was a leader in the self-advocacy movement. He led a group called Speaking for Ourselves in Philadelphia. He wrote “People need to be out in a community, because dollars are spent in an institution—every head is in an institution, a dollar is spent there and not in the community…The services need to be in the community and not in an institution.”
There are now more than 1,200 self-advocacy groups in the U.S.
Max Barrows is a self-advocate. He works for Green Mountain Self-Advocates and was on the board of the organization Self Advocates Becoming Empowered. He said, “Who knows us better than we know ourselves? People with disabilities need further opportunities to take the lead on work, policies, and decisions about our lives.”
The self-advocacy movement is changing this.
Many people think some people have “good” brains and some people “bad” brains. They think only some people think and act “normally.”
Neurodiversity means all our brains are different. This is a good thing.
People with disability-related brain differences are “neurodivergent.”
People without these differences are “neurotypical.”
Sara Luterman is an Autistic activist and journalist. She told me why neurodiversity matters to her. She said, “I always had this concept of myself, like maybe I was just a bad person. People just didn’t like me and I didn’t understand why, so thinking I was a bad person was the logical progression for me. Neurodiversity gave me the ability to realize that that’s not the case. I just have a different kind of brain, but it’s morally neutral. There’s no good or evil involved.”
The neurodiversity movement is not about neurotypical people. Dr. Jessica M.F. Hughes wrote, “Neurodiversity is a ‘big tent’ concept that includes every person in the world and centers the experiences of those who are neurodivergent, but the neurodiversity movement is much smaller in scope. Autistic self-advocates are leading the contemporary neurodiversity movement.”
Neurodiversity celebrates difference. It is not something that needs to be fixed or cured.
Autistic activist Jim Sinclair wrote, “The tragedy is not that we’re here, but that your world has no place for us to be.”
Psychiatric survivors are people with mental illness. They have been hurt by the doctors, hospitals, or institutions that were supposed to help them. Some people are given treatment they don’t want.
This movement is also called:
It was started in the 1970s. It was led by “ex-mental patients.”
Judi Chamberlin was one of these leaders. She wrote a book called On Our Own: Patient-Controlled Alternatives to the Mental Health System. She wrote that they were, “taking a label of shame and attempting to transform it into one of pride.”
Being proud to have a mental illness is called Mad Pride.
People in the psychiatric survivors movement don’t always agree about how to advocate. They have a lot of ideas about what should happen. But they all agree that mentally ill people should be in charge.
Leah Harris is a psychiatric survivor. They told me people with mental illness should help each other. They said, “It’s an innovation and a gift to the world. It’s so different from the existing system of psychiatric care. It’s about meeting a person where they are and providing support that is noncoercive. It’s about holding space and listening nonjudgmentally.”
Leah wants people to know about the movement. They say, “beautiful things have emerged from it.”
“Staying alive is a lot of work for a disabled person in an ableist society.”
-Alice Wong, editor of Disability Visibility: First-Person Stories from the Twenty-First Century
Have you heard these words before?
They are all words that mean one group is treated worse than another group. This is called discrimination.
The word for discrimination against disabled people is ableism. It means people with disabilities are treated worse than people without disabilities.
This is how I define ableism:
“Ableism is attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.”
We say something caused by ableism is ableist.
Ableism has always happened. But we didn’t start using the word until the later part of the 1900s.
Sometimes it can be hard to describe ableism. It is part of our everyday life. Nondisabled people may not even notice it.
Ableism is something disabled people always have to deal with. It never goes away for us.
I don’t think it will be easy to get rid of ableism in the world. It is all around us.
Here’s an example of ableism:
The subway in New York City does not have many elevators. When I ride it, sometimes I am the only wheelchair user. People are surprised to see me. They will say things like:
This is ableism. They think disabled people don’t use the subway. They may think I don’t have anywhere to go.
More wheelchair users could take the subway if every station had an elevator. Then, people would not be surprised to see me.
But there are not a lot of elevators because so many people think disabled people don’t have anywhere to go.
That is an example of how if people think in ableist ways, they build ableist things. These things cause more people to think in ableist ways.
There are still laws that treat disabled people unfairly. One of these laws is the Fair Labor Standards Act. It says disabled people can be paid less than nondisabled people.
This happens in places called “sheltered workshops.” Only people with disabilities work in sheltered workshops. Their jobs are to do the same thing over and over again. They only make a few cents per hour. A nondisabled person would be paid more money to do the same work.
One sheltered workshop in New Mexico is called Adelante Development Center. They were sued in 2019 because they didn’t pay enough money to the disabled people who worked there. Suing means they took them to court to try to make them pay money for what they did wrong.
Some people like sheltered workshops. They think we need them. They say the people who work there could not get a job somewhere else.
Places that run sheltered workshops (like the company Goodwill) think they’re doing a good deed. They are also getting a good deal because they don’t have to pay their workers a lot of money.
Disabled people don’t deserve to make less money just because they have disabilities. We can think about this problem using the social model of disability, which we talked about in Chapter 1. The social model says disabled people are not worse off because we have disabilities. We are worse off because we are not treated fairly.
Paying disabled people less than nondisabled people is not okay. It is ableist.
Some companies don’t care if disabled people can’t use their products and services. For example:
Sometimes I think something is ableist but another disabled person doesn’t think it is. That’s okay. Not all disabled people think the same. It’s ableist to think that all disabled people share the same thoughts.
It’s mostly nondisabled people who don’t like when I bring up ableism. For example:
Some people think that disabled people who bring up ableism are “bitter cripples.” Bitter means angry for being treated unfairly. Being called bitter is an insult. I have been called bitter for saying what I think.
But I’m not bitter. I just want a more accepting and loving world for everyone, including disabled people.
Ableism is everywhere. Sometimes disabled people internalize it. That means we think that disabled people are worth less than nondisabled people because that is what everyone around us thinks. I have had a hard time with this. I have:
I have to remind myself that my disability is not bad. It is not embarrassing. I am not hard to be around because of it. If someone thinks of me that way, it’s their problem. Not mine. Disability does not make a person worth less.
But ableism is hard to deal with. A lot of disabled people believe ableist ideas about themselves. They believe our lives are not worth living.
That is not true. Disabled lives are always worth living.
I fight against ableism. But I’ve been ableist to other disabled people. I’m not proud of it, but it happens. It will probably happen again.
We all need to work to be less ableist. Sometimes that means thinking about how ableism is connected to other kinds of discrimination.
One example is the sad story of Seven Bridges. Seven was a Black 10-year-old with a disability. He wore an ostomy bag. That’s a bag you wear on your stomach to collect body waste.
Seven was bullied. His classmates said racist and ableist things to him. They choked him. They made fun of his ostomy bag.
In 2019, Seven took his own life.
Seven was treated this way because of his race and disability. It’s not just one or the other.
Black disabled activist Imani Barbarin wrote about Seven. She said we need to “create space for disabled Black, Indigenous, and people of color to feel like they’re not alone in all the intersections [they] inhabit.” This work “is lifesaving, and it’s time we get to it.”
Sometimes people will say ableist things when they are fighting against other kinds of discrimination. For example, they will say racism is a “sickness” or a “disease.” They are trying to say racism is bad and we need to get rid of it. But when they say this, they are actually calling racism a kind of disability. This is a problem because:
Disability often gets left out of other activism. For example:
Don’t worry if you have been ableist in the past. I think we can all learn to be less ableist. Dominick Evans does too. He is a filmmaker, consultant and online streamer. He said, “I don’t personally like dismissing people for being ableist. It’s embedded in our culture, and I had to learn to be better, so how can I expect nondisabled people to know how to be better? What gets me is when people learn the harm they’ve caused, and double down about it.”
This quote sums up what I want you to learn from this book. I believe you can do better and be less ableist. We all can. It’s time to change.
Most people think of ramps and elevators when they think about access. But accessibility is much more than that.
Accessibility means that:
can be used by disabled people.
Sometimes, to make things accessible, we must make changes. These changes are called accommodations.
There are many kinds of accommodations. For example, you could:
A lot of people don’t think about accessibility. Without it, disabled people are left out.
It’s like everyone else has a secret password to a cool new place. I don’t have the password, so I am not allowed inside the place. Or if I can get in, I don’t have the password for the bathroom. I can never really get comfortable. That’s what not having access feels like.
It can be really frustrating. The world was not made for disabled people. It hurts me every time something is not accessible.
Sure, sometimes my disability means that I get to go to the front of the line somewhere or pay less for a ticket to a museum. This may seem like I am getting special treatment because of my disability. But accessibility is not about special treatment. It is about making things equal. Everyone should get the same chance to do things. And that means I should not have to do things like go into any buildings through the back door by the dumpsters because the front door is not accessible to people who use wheelchairs.
Inaccessibility makes things hard. Friends have told me I couldn’t hang out with them. Dates I went on with men have been ruined. There are many places I can’t go.
It makes me tired.
I hear a lot of excuses about why things can’t be accessible. People will say:
Sometimes they’ll say, “People with disabilities don’t come here. There’s no point to making it accessible.”
These excuses are what people say when they really mean: “Disabled people are not welcome here.”
It hurts to hear these things. It makes me think I am a burden. A burden is something hard or annoying you have to deal with. I have to remind myself that disabled people are not a burden or a problem. Inaccessibility is the problem.
Rebekah Taussig wrote a book called Sitting Pretty. She wrote about how hard it is that so many things are not accessible:
“Many days, I feel too vulnerable to leave my house, too fed up to subject myself to the gamble of strangers interacting with me, too tired to fight to occupy a corner of space. Inaccessibility over time tells me that I do not matter, I’m not wanted, do not belong. This land wasn’t made for me. So I stay in, keep to myself, avoid, cancel plans, carry anxiety in each fold and bend of my body, feel very alone and trapped and helpless.”
It shouldn’t be this way. Making things accessible is not just the right thing to do. It’s the law. But there is still a lot of work to do to get it right.
It can feel overwhelming to think about making things accessible. You may worry that you’ll mess up. You may worry about breaking the law.
But disabled people aren’t trying to attack you or get you in trouble when we ask for accessibility. We just want an equal chance.
So where can you start to learn about what accessibility is and how to make things accessible? It’s not hard to learn what you need to do.
You can always ask if you’re not sure. Two of my favorite resources about accessibility are:
They both have free information that can answer your questions.
You may want to ask a disabled person directly about how to make things accessible. That can be very helpful. But you need to respect that someone talking to you about accessibility is work. If you can, pay them for their time and knowledge. Hire a disabled consultant.
A lot of times, you can make something accessible for very little money. Many changes are free to make. For example, you could:
Sometimes, the things that people think are “solutions” don’t actually make things accessible. They can make things worse. For example:
Access helps us all. We call this the “curb-cut effect.” Curb cuts are ramps that connect the sidewalk to the road. They were made for wheelchair users. But they help many people. Curb cuts are helpful for:
The world needs more solutions like curb cuts.
More access means more people are included.
Here is a story that happened to me about a place becoming accessible. A new coffee shop opened in my neighborhood. When I went to visit, I couldn’t get inside. I called the owners. They agreed to put in a ramp. I wasn’t sure it would actually happen. They called me a few months later. They wanted me to know they put in the ramp. I wondered what took so long, but I was still glad they called me. I felt like the owners of the shop really wanted to include me. I wish they built the ramp before they opened the shop. But I am always happy when people make things accessible.
I could write a whole book about ableist things that have happened to me. But ableism isn’t just my story. It is something that all disabled people experience. There’s no way to cover it all. But I want to share a short list of examples. I hope you will see how ableism is everywhere.
These facts may feel overwhelming. But remember, knowing about ableism is the first step to working toward a world that is less ableist.
“Overthinking is one enemy of disability etiquette, but so is making assumptions about what a person wants and needs. Of course disabled people want to be treated like everyone else, but when we say that, we don’t mean ‘treat every person exactly the same.’ We mean ‘recognize our humanity and meet us where we’re at.’”
-Kyle Khachadurian, cohost, The Accessible Stall podcast
Etiquette means the rules for how to behave. That can be:
Disability etiquette means how you treat disabled people in your everyday life.
There are not a lot of special rules for being around disabled people, though. It’s all about the Golden Rule, which is to treat others as you want to be treated.
You wouldn’t want someone to be rude or mean to you, right? Just keep that in mind.
I am going to go over some do’s and don’ts for how to act around disabled people. I can’t cover everything. But you can use these tips in all your interactions.
Don’t overthink it. You don’t have to treat disabled people like they are different from nondisabled people. Just treat us like human beings.
All of these tips are based on respect. Be thoughtful about what you say. It makes a big difference.
Every time I leave the house someone says something about my wheelchair. People say things like:
When people say these things, they think it’s the first time I’ve ever heard that joke. It’s not. I hear these jokes about my wheelchair all the time.
One time a man took the joke too far. My mom and I were rolling side by side in our wheelchairs down a hallway. He blocked our path and told us to race for him. We told him to leave us alone. He followed us to our car. He told us he was sorry for bothering us. He even tried to give me dad money to say sorry. He got angry when we wouldn’t take the money. Don’t be like this guy.
Disabled people get asked a lot of rude questions too. People ask me things they don’t need to know the answer to. For example:
Getting asked these questions makes me tired. These questions aren’t always just things people don’t need to know. They’re harmful.
Andrew Gurza is a disability awareness consultant. He remembers his high school gym teacher asked him if his disability would affect how long he was going to live.
Gurza told me, “I was fifteen at the time, and I was so extremely embarrassed. I had never had to consider my own mortality before. I was so angry, I left her classroom crying. All the other kids saw me leave. I was mortified.”
People are curious about disability. But disabled people don’t owe you answers to your questions. Especially if they don’t know you. Autistic activist Jim Sinclair says that disabled people are not “self-narrating zoo exhibits.” That means we don’t have to teach nondisabled people about ourselves.
Are you not sure if it’s okay to ask your question? If you wouldn’t ask a nondisabled person the same question, don’t ask a disabled person.
Don’t give someone advice unless they ask you for it. This happens to physically disabled people all the time. We joke that we’ll talk about chronic pain or muscle weakness and someone will tell us:
People are trying to be helpful when they say these things. But it feels like they’re talking down to me. I know what is best for my body best just like you know what is best for your body.
Maybe you have a real suggestion that can help someone with a disability. You can say, “Can I share what worked for me?” If they say yes, tell them your advice. If they say no thanks, don’t.
Some questions you should never ask. But sometimes it’s okay to ask questions. Deciding if it is okay depends on:
For example:
People often don’t respect disabled people’s personal space. Strangers will lean on my wheelchair. They treat it like an armrest. They think it’s harmless. But it’s not. My wheelchair is part of me. It’s how I move. I feel trapped when someone leans on it.
When I was in school, I used to get out of my wheelchair and sit at a desk. My teacher would lean on my wheelchair during class. It made me uncomfortable. But I felt like I couldn’t say anything.
You wouldn’t lean on a person you don’t know, would you? It’s the same with wheelchairs. You might lean on a friend, but you need to make sure it’s okay first.
Don’t move someone’s mobility equipment without asking either. Don’t start pushing someone’s wheelchair if they haven’t asked. It can be scary when someone else takes control of how you move. Would you push someone who doesn’t use a wheelchair? I don’t think so.
Some disabled people don’t like being touched. It can be uncomfortable. Ask before you shake someone’s hand or hug them.
I like to hug people. But first, I ask, ““Are you a hugger or more of a handshake person? Neither is okay too!”
Some people like:
Let people do what makes them comfortable.
It’s also not okay to touch service animals. They are doing their job to support their handler. Petting a service animal can make it lose focus. That can be dangerous for the person the animal is helping.
For example, imagine a service dog guiding their blind handler down the street. If you pet the dog, it might not notice something is blocking the street. Their handler could fall or get hurt.
I talked to Dr. Anjali Forber-Pratt. She is a wheelchair user and has a service dog named Kolton. She said, “When he is working and somebody goes to pet him, it is a problem because it confuses him. He then thinks that it is off-duty play time and will be paying more attention to the person trying to pet him than to me. If he is in the middle of a task for me, like carrying something, he might drop it, and we have to start the command sequence over again. Don’t pet service dogs when they are working!”
Dr. Forber-Pratt said if you really want to pet a service dog, “Always ask the handler first. Sometimes there are occasions when Kolton is off duty and it is allowed during play time, but it’s important to respect the handler’s wishes!”
A lot of people are uncomfortable talking to people with disabilities. People worry about what to say to them and how to say it. My advice is simple: Talk to a disabled person the same way you talk to everyone else.
Always talk to the disabled person themselves. Don’t talk to their staff, support person, or family instead.
I talked to writer and activist Kings Floyd about this. She told me about a night she went out with her sister Isabel. Floyd uses a wheelchair and her sister is nondisabled. At dinner, the server thought Floyd couldn’t speak for herself.
“She took Isabel’s order first and then asked her ‘What is she having?,’ referring to me. Isabel remained silent, looking intently at the waitress and then at me. I coolly answered ‘I’d like the carbonara, please, with mushrooms. I’ll also have a lemonade and a side Caesar salad. We are still thinking about dessert.’ The waitress nodded, uninterested and avoiding eye contact…Later, when she came back with the check, she handed it to Isabel after I had already clarified I was paying. Thankfully, the improv show was amazing and saved the night, but the waitress’s tactless assumptions left me feeling truly disrespected, as though she believed my voice didn’t matter.”
Always be direct and respectful. Conchita Hernández Legorreta is a blind activist. She said you need to introduce yourself when talking to a blind person. “Say your name before speaking…[Making] a blind person guess who you are is super-rude. Also keep in mind that many people with low vision can see some things but faces are still very difficult, so do not assume we know who you are.” It’s as simple as saying, “Hi, it’s [full name] speaking.”
If you want to talk with someone who is blind or deaf, respect their personal space. To get someone’s attention, you could tap them on the shoulder.
But not everyone wants to be touched. Christine Liao is a deaf advocate. She says you can get “in the d/Deaf person’s line of vision and making a gesture, like a wave, to let them know you are there and wanting to communicate.” She says the “two most common ways folks suggest to get a deaf person’s attention—a tap on the shoulder or flickering the lights—be saved as a last resort.”
Some deaf people have sign language interpreters. Look at the person, not the interpreter. You don’t need to ask the interpreter “Can you please tell them…?” Just have your conversation.
If there is no interpreter, use a pen and paper or type out your message on your phone.
How do you start a conversation with someone who is d/Deafblind? Elsa Sjunneson is a partially Deafblind author and activist. She told me people think she can’t be part of conversations because of her disability. This isn’t true. She said, “The best ways to get my attention are to speak clearly (not shouting) and say ‘excuse me’ or ‘hello.’ It can also help if you wave your hand in my visual field, but it depends on where I’m sitting.”
You can also have a friend who knows both you and the deafblind person introduce you.
Some people stutter or speak slowly. Others use communication aids like letter boards or devices to type on. Don’t rush them or try to guess what they want to say.
Eva Sweeney is a sex educator with cerebral palsy. She uses a laser pointer attached to a baseball cap to spell out words on a letterboard. She told me, “Just talk to us like you would anyone else. You might have to wait to hear our response, but it is not that different than talking to someone who is verbal! People communicate in a variety of ways, so be open-minded to new ways of communicating and connecting with someone.”
Is the person you are talking to shorter than you? Are they sitting in a wheelchair? If you are standing and they have to stretch their neck up to look at you, take a few steps back. You can sit so you are at eye level with them. I don’t mind if people kneel to talk to me. Some people don’t like that though.
Whatever you do, don’t make it a big deal. Once a woman in high heels wanted to talk to me at a fancy event. She crouched down. But her shoes made her keep losing her balance. It was awkward. She could have just stayed standing up straight.
Use clear words and sentences to talk to someone with a cognitive disability. Explain longer words or words they may not know. Don’t speak more loudly or slowly unless they ask.
Just remember this one thing: there’s no “right way” to talk to anyone. We get taught rules about how to talk to people like:
But not everyone can or wants to follow these rules. The best thing to do is just to be yourself.
No matter what, respect is key.
Disabled people are often infantilized. That means they are treated like they are much younger than they are. Disabled kids get treated like babies. Disabled adults are called “cute” or patted on the head. This happens a lot to people with developmental disabilities like:
Julia Bascom is the executive director of the Autistic Self Advocacy Network. She told me that a lot of people think people with developmental disabilities can’t:
Bascom said, “But that just isn’t true. That belief is dehumanizing, and responsible for a huge amount of mistreatment.
You should always presume competence. That means believing that people can do things like speak for themselves or make decisions. Some people need support, but that doesn’t mean they can’t do something.
“The reality is that people with developmental disabilities, including people with the most significant disabilities, have rich and complex inner lives. No matter how significant our disability is, we can and do learn, think, and feel. We might do these things differently, or more slowly, or with more effort compared to other people. Our complexity and competence may not be obvious in ways that people expect. We might need a lot of support. Presuming competence is the idea that, regardless of these things, we are fully human with the same rights as everyone else and, with the right support, we can express ourselves, participate in our communities, and make our own decisions.”
Some people treat all disabled people this way. They think if someone has a physical disability, they also have a cognitive disability. It’s not a problem to get someone’s disability wrong. It doesn’t matter whether someone has a cognitive disability or not. The problem is treating anyone like they are less than human because you think negative things about disability.
Everyone should be treated with respect.
It takes me a while to put on a jacket. I have to wiggle my arms and flip it over my head. It might look like I can’t do it on my own. But I can. I have done it a lot of times in my life. But strangers will always try to help. They’ll grab my jacket without asking and try to put it on me.
They think they are being kind. But they are in my personal space. They are making it harder for me to get my jacket on. I didn’t ask for help. But I worry it is rude for me to tell them I don’t want help.
I think it’s rude to try to help someone who didn’t ask for help.
How I look affects how people treat me. I am a small young white woman. I look friendly. People look at me and see someone who looks like they always need help. Not everyone has the same experience. I once saw an elderly Black man in ripped clothing and an old wheelchair in New York City. He asked many people to help him reach his tote bag that was hanging on the back of his chair. He shook a cup of coins while he asked. People acted like they couldn’t hear him.
He didn’t ask me for help. Maybe he thought I couldn’t help because I used a wheelchair too. I asked if I could do anything. He accepted. I was happy to help. But it shouldn’t have come to that. People shouldn’t have ignored him because of how he looked.
Sometimes people won’t take no for an answer. Walei Sabry is a blind disability rights activist. He told me a story about walking to the train with another blind classmate after school. “All of a sudden, out of nowhere, two strangers decided to take it upon themselves to help us. Without saying anything, they each grabbed one of us. I started to ask the man who grabbed me to let go, telling him that we were fine. They insisted on helping and there was a back and forth for a few minutes. The gentleman that grabbed me finally said, ‘I don’t understand. We are just trying to help you.’ To which I replied, ‘We didn’t ask for your help!’ They finally got the point but they weren’t happy about it. As the man walked away, he yelled, ‘You two are the worst blind people in New York!’”
Disabled people know what we need. Listen to us. This is important to remember for someone having a mental health crisis too. Leah Harris is a psychiatric survivor. They said helping someone in crisis doesn’t mean doing whatever you think is right. It means you should “ask the person what they need in that moment, or how you can support them. And if the person is not able to articulate that, then you can offer some suggestions. If you have lived experience, you can offer to share with the person what helps you in similar moments. But please, avoid the urge to ‘fix’ and make it better without first centering what the person in crisis wants and needs.”
With my power wheelchair, I’m easy to notice in a crowd. I’m comfortable with people looking at me. Sometimes people stare. It could be because my wheelchair is big and purple. I think my wheelchair looks pretty cool.
But I get other kinds of stares too. When I’m with another disabled person (like my mom), people look at us like we just escaped the circus. It’s like I’m on display.
Disabled people get stared at a lot. Here are some examples:
It’s okay if someone catches your eye because of how they look or act. But you don’t need to stare or to turn away. Act like you would when anyone else passes on the street. If they catch you staring, just smile and move on. Do better next time.
Once I was staying in a hotel. I was in a town to interview for my dream job. I was in the hotel lobby to get breakfast. A young girl and her mom asked if I needed help with my cereal bowl. I said yes. They helped me and I said thank you.
Instead of walking away the girl said, “Mommy, can I pray for her?” She prayed for Jesus to heal me. Everyone in the lobby watched uncomfortably. I said thank you and quickly left. I was so embarrassed.
I tried to laugh about it. But I felt sad. I had been excited for my big interview that morning. But this girl made me remember that some people think my disabilities are bad. They think my body is a mistake. I wish I could find that girl and take back saying thank you. I want them to know that I am not broken. I don’t need prayers to be fixed.
You can’t tell if someone has a disability by looking at them. Just because someone doesn’t “look” disabled to you doesn’t mean they don’t have a disability. Don’t spend time worrying if someone is disabled or not. Just always use disability etiquette and think about accessibility.
Sometimes people get told they are “faking” their disability if they don’t look a certain way. This happens a lot with accessible parking spots.
Lacey Henderson is a Paralympic athlete and an amputee. People have thought she was nondisabled before. She told me, “When I was in college, I drove a green Volkswagen Beetle, wore big sunglasses, and blasted music wherever I went. Once, I was running to return a library book and a woman accosted me at my car, shouting that I was in an accessible spot. I had put my placard up already, but maybe she didn’t see it. I was like, ‘I have a prosthetic leg,’ and she acted as though I really inconvenienced her, because how in the world could a cute girl in a little car who is enjoying life also have a disability that qualifies her to have a placard? Of course, as a young woman in my twenties, I was apologetic (because we’re taught to be accommodating and not let people feel uncomfortable with us), but I wish I had been told by someone that I didn’t owe any of these people any answers.”
Henderson is right. Disabled people don’t owe answers about their disabilities to anyone. No one should assume they know who has a disability and who doesn’t.
But don’t pretend someone doesn’t have a disability when you know they do. You don’t need to bring it up, but don’t avoid it if it comes up in conversation.
Imagine going somewhere and you:
This happens to disabled people a lot. There aren’t a lot of accessible parking spots, bathroom stalls, or seats. Many people want to use them. Disabled people will spend extra time and effort planning outings or getting to places early so they can make sure it’s accessible. That is not something nondisabled people have to do.
I make a plan everywhere I go in case there is an accessibility problem. I plan extra time to:
If you don’t need these accessible things, don’t use them. You’re making it harder for someone who does need it.
Remember to not judge other people who use accessible things. You don’t know if they have a disability. You can’t see all disabilities.
It’s sometimes okay to use the accessible stall in the bathroom. I understand if:
But that stall is not for you to:
If there’s a long line for the bathroom and the accessible stall is open, ask if anyone else in line needs it before you use it.
It’s never okay to park in an accessible spot unless you have a permit. Not even for a minute. Not even while you’re waiting for another spot to open. It’s also not okay to park on the blue lines between accessible spots. Those lines are to make room for people to get in and out of their cars and vans. If you break the rules, someone with a disability could get stuck and not be able to get back into their car. Don’t do this.
I like when people take time to listen and understand other people. But I don’t like when people say they know what I’m “going through.” These kinds of people pity me and look down on me.
Maddy Ruvolo is a transportation planner who is chronically ill. She talked to me about how people react to her disability. “There have been many occasions when I tell people I have chronic fatigue and they are like, ‘Ugh, yeah, I get so tired, maybe I have that too.’ I know it comes from a place of trying to relate, but it feels very dismissive of my experience.”
Feeling bad for someone with a disability may not be the right way to react either. Ruvolo said, “Sometimes, people respond by saying things like, ‘Oh I’m so sorry.’ I know they’re coming from a good place, but I’d rather not be in a position of having to say ‘Oh, yeah it’s totally fine’ and assuage their feelings.”
Ruvolo says the best thing to do is just say “Thank you for sharing.”
You can support someone with a disability without pretending you’ve had the same experience. Sometimes people will tell me about when they used a wheelchair after they got hurt. They tell me “I totally know what you’re dealing with.”
It doesn’t feel good when people tell me that. Having a disability is not the same as healing from an injury. Maybe you used a wheelchair after you broke your leg. Maybe you found out that some places are not accessible. But you haven’t lived your whole life being treated unfairly because of disability.
I know these people are trying to be nice. I want to ask them these questions:
You may not know what it is like to have a disability, but you can help spread awareness.
Kids are curious. They stare at people who are different from the people in their lives. They ask questions that would be rude to ask if they were adults.
I don’t mind when kids ask me questions. That’s how they learn about the world. Sometimes the questions can be pretty funny, too. I am happy to show a kid my wheelchair or explain what my disability is. Hopefully, I can teach them something in a friendly way.
Not all disabled people want to answer kids’ questions and that’s okay. Don’t take it personally if a disabled person won’t answer your kid’s question.
I have some ideas for how to make it less awkward if your kid has a question. I can tell you what I think as a disabled person. But I have been the adult in charge when a kid asks an awkward question, too. Once I took my 8-year-old neighbor to the movie theatre to see Frozen 2. The ticket-taker at our movie theatre has a facial difference. My neighbor asked him “What happened to your face?” The ticket-taker answered the question nicely. But I was embarrassed. I didn’t know what to say. I thought my neighbor was comfortable with all people with physical differences since she spent time with my mom and me. I told her that no one looks the same. Being different makes the world a beautiful place. But I also told her it’s not nice to shout out nosy questions. I think she got it.
Did I handle this as well as I could have? Did I get through to my neighbor? I don’t know. I hope so. These moments are hard.
Here’s the advice I have:
I asked my parents for advice. I wanted to know what to do when someone asks questions about your disabled child. My dad said, “There are no hard-and-fast rules. Your instinct as a parent might be to want to take the opportunity to educate, especially if it’s a child who said something. You’ll want to defuse the awkward situation. And if a child is scolded or the adult in charge gives a harmful response, your urge might be to correct it. But also recognize that your response might not be well received. So it’s best to decide on a case-by-case basis when to let it go and when it might actually be a teachable moment.”
My mom agreed. She thought about what it was like to raise me. She said, “Dad and I wanted to help you understand that, yes, you have a disability and, yes, people are going to ask questions or treat you differently, because that’s reality, unfortunately. It was important for us to make sure you knew that you shouldn’t be ashamed of yourself, to teach you how you could respond in the moment, and to support you unconditionally.”
Are you worried that you have done some of these rude things? You probably have. But it’s okay. Don’t feel bad. You can start doing better now.
If someone tells you you are being ableist, listen to them. Don’t try to make excuses for why you were ableist. Think about how the disabled person is feeling.
It might seem hard to do this if something happens with a stranger. But it can be simple. Here’s an example. Once my mom was waiting in a long line at the store. The woman behind her said, “You’re so lucky you don’t have to stand in this line.” My mom just sighed. That was a rude comment. As my mom was leaving, the woman said, “Hey, I really shouldn’t have said that. I’m sorry.”
You have more options if you do something ableist to someone you know. You can spend time thinking about what happened. You can think about what you did or didn’t do that hurt that person. Then you can talk to them about it and say you’re sorry.
The other person might not want to talk about it. That’s okay too. Just move on.
If you did something ableist a long time ago that you’re still thinking about, you can do something about that too. You don’t have to start being extra nice to all disabled people. And you shouldn’t bring up something that hurt someone else just to make yourself feel better. But sometimes having a good conversation can help you grow. You can better understand a disabled person’s perspective. And it might help them feel better too.
What should you do if you see something ableist? I try to be kind when I tell someone they are being ableist, but also make sure they understand why I am talking to them about it. I want to get through to people, so I try not to hurt their feelings. Here are some examples:
Every situation is different. You won’t always get it right. But be more aware. It can make the world a better, less ableist place.
“Indeed, the history of disabled people in the Western world is in part the history of being on display, of being visually conspicuous while being politically and socially erased.”
-Rosemarie Garland-Thomson, professor of English and bioethics
My mom Ellen was a kid in the 1970s. One day she saw an ad for a kids’ TV show called Zoom. The ad showed a guest star named Dee. And Dee had Larsen syndrome just like my mom! My mom was surprised. She had never seen anyone else with Larsen syndrome other than her brother. The TV station helped my mom get in touch with Dee. They sent letters to each other. They’re friends on Facebook now.
After that, my mom didn’t see anyone else that looked like her in the media until she was older.
Media includes things like:
Things got a little better when I was a kid in the 1990s. I remember seeing kids with disabilities like me two times in books or TV:
When I was 10, I got to be on Sesame Street too. While I was on the show, I talked about what it is like to have a physical disability. I met Elmo and Big Bird and Oscar the Grouch. It is one of my best memories. I got recognized by people I didn’t know a few times from being on the show. That made me feel like I made an impact. Having people who actually have disabilities in the media makes a difference.
It is hard to find good examples of disability in the media. Disabled people are treated like only their disability matters. They aren’t shown as being real people with personalities.
Most of the time there are no people with disabilities in media at all. An organization called GLAAD wrote a report about who was shown on TV. Here’s what they found:
That’s only 3%. That is a lot less than the number of disabled people in the world.
Media doesn’t do a good job showing that all disabled people are different. The same kind of disabled people get shown over and over. They are:
But disabled people look many ways. We come from many kinds of backgrounds. Media needs to show that.
Keah Brown talks about this in her book The Pretty One. She says, “There is nothing inherently wrong about telling the stories of the white and male wheelchair users—their stories are important—but there are also other stories worth telling.”
Another problem is disability stereotypes. Stereotypes are beliefs about a group of people that are not true. For example, it’s a stereotype that disabled people can’t date or get married. It is not true, but a lot of people think it is. When the media use stereotypes about disability, people think they are true. That changes how nondisabled people think about disability. It also changes how disabled people think about ourselves.
I explain those stereotypes in this chapter. Sometimes they are called “tropes.” Knowing about tropes can help us figure out how to show disability better.
“Inspiration porn” is a term for a certain kind of story. That story is:
Here are some examples of inspiration porn:
Many nondisabled people think inspiration porn is good. But there are many problems with it.
Stella Young explains it well. She was a disability activist who made the term “inspiration porn” popular. She gave a TEDx talk about it, saying, “We’ve been sold the lie that disability is a Bad Thing, capital B, capital T. It’s a bad thing, and to live with a disability makes you exceptional. It’s not a bad thing, and it doesn’t make you exceptional.”
Inspiration porn is a problem. It makes nondisabled people feel bad for disabled people. It makes people think:
Inspiration porn is everywhere. You have probably seen it before. Here are examples of a few different types.
Think about this:
This kind of inspiration porn is supposed to make you want to work hard. It makes you feel guilty that you aren’t doing enough. You might think it just means, “anything is possible” if you have a good attitude.
But Stella Young says this is wrong. “No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. Smiling at a television screen isn’t going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into Braille. It’s just not going to happen.”
But people still think disability is something you can get over by having a good attitude. They think people are disabled because they don’t try hard enough not to be. But that isn’t true.
When most people get married or graduate from school, it’s an event they share with their family and friends. When disabled people do these things, their stories often get shared with millions of strangers. Stories like:
But why do these stories touch people’s hearts?
Because some people don’t believe that disabled people can live full lives. They don’t think we can graduate or get married. So, they think it’s special when we do. But many, many disabled people can and do reach these goals.
Not everyone thinks this kind of story hurts disabled people. Some people think I’m being rude when I am talking about inspiration porn because they think I am attacking someone’s happy moment. They think I must be angry that I didn’t achieve the same thing. That’s not true. I think we should celebrate good things. But these stories are a problem. It wouldn’t be news if the same thing happened to a nondisabled person.
Expectations are what someone thinks you can and should do.
The media often shows disabled people in two ways:
Most of the time, the media shows us in one of these ways. We are supposed to be either superheroes or nothing. These expectations don’t let us just be people like everyone else.
This can be hard for disabled people. My mom once told me about a news story she saw about disabled veterans climbing mountains. We felt like failures for not being able to climb mountains.
But disabled people don’t have to prove themselves to anyone. We are just like other people.
Nondisabled people who are nice to disabled people get treated like saints in the media. Some examples of this kind of story:
These stories are supposed to make you feel good. You are supposed to think the world is a good place if these kinds of things happen. But why is being nice to a disabled person a news story? Why does loving a disabled person make you a hero?
My family knows about this. My dad Marc is nondisabled. My mom and I are disabled. People treat my dad like he’s a hero for helping us. Someone even called him “Saint Marc.” This is wrong because it:
My dad does more things than some other dads and husbands. But that’s not the only thing that matters about him. He is more than just a person who loves and takes care of disabled family members.
Sometimes, a nondisabled person will film themselves being nice to a disabled person. But:
When stories like these are just used to make people feel bad for not being nicer to people or to get a lot of views online, they aren’t really about being kind at all.
When you share media that is inspiration porn, you are sharing stereotypes about disability. So, what can you do instead? You can ask these questions:
OR
If you answered “Yes” to the second set of questions, that’s probably inspiration porn. Don’t read or watch it. Don’t share it. Or if you do share it, explain why it’s bad. That’s how we can get other people to change how they think about disability.
Pity means feeling bad for someone. Pity porn is media that treats all disabilities as sad or tragic. It is supposed to make you feel bad for disabled people.
Media will treat disability like it’s the worst thing that could ever happen to someone. It is shown as being bad for both disabled people and their nondisabled friends and family.
Media also does not treat people with mental illness well.
s.e. smith is a writer who identifies as mentally ill. smith wrote an article about disability in kids’ books. They said:
“Mental illness is frequently dealt with in very troped, and often harmful, ways, illustrating that creators didn’t take the time to research, learn about the lived experiences of the communities they are writing about, or think about the responsibility involved in depicting mentally ill people, an already marginalised group within our larger culture.”
Magazines often have stories about celebrities’ mental health. They treat it like it’s a joke. One example of this is how media talks about the singer Britney Spears. They make fun of her mental health or use her story to make money. When we read these stories, it’s easy to forget that Spears is a real person. She doesn’t just exist to entertain us.
Mental illness is also shown as scary in the media. If someone does something violent, the media will say they are “mentally ill” or “crazy.” This makes people think everyone with mental illness is dangerous. But that’s not true. People with mental illness are more likely to be hurt by others, not hurt them.
Some media stories are about staring at people who look or act different than what is considered “normal.”
This has been happening for a long time. There used to be something called “freak shows.” Leonard Cassuto writes about them in the book Keywords for Disability Studies. He writes: “Human oddities, whether alive, dead, or stillborn, were confined (often against their will) and categorized through theatrical display.”
Freak shows made money for nondisabled people. Freak shows do not exist anymore, but you can see similar things on TV or social media.
Melissa Blake is a writer and advocate. She has Freeman-Sheldon syndrome. It is a visible disability that affects how she looks. She says, “My decision to be so visible and so open about my life and my disability has, indeed, shown me quite a nasty side of people. I’ve lost count of the number of times people have mocked my appearance. These trolls never offer a critique of what I’ve written; they always go for the insults about my looks. We live in such an appearance-focused society, so if you don’t look a certain way, the trolls pounce on that.”
Blake fights back against the people who make fun of her. She said, “Their words hurt, but they’ve actually motivated me. To be more vocal. To speak up. And, yes, to show my face (hi, selfies!) any chance I get. I may not be able to change everyone’s point of view, but I’m determined to show the world that disabled people are here and we’re not going anywhere!”
A lot of people think disabled people either:
There is not a lot of information in the media about sex and disability. And some of the information you can find is wrong. Some people think disabled people are:
Other people fetishize disability. That means they treat disabled people like they only exist for sexual reasons. The people who do this are called “devotees.”
Disabled people can be sexy and sexual! We can have active, healthy sex lives.
Disabled people can be:
Some disabled people don’t want to have sex. Some want to have a lot of sex. We all like different things. Just like everyone else.
There is some media about disabled people having sex or falling in love. But there’s not a lot. We are still fighting for the world to see that we can have sex and fall in love too.
The Netflix series Love on the Spectrum is a reality show. It is about Autistic people finding love. A lot of nondisabled people liked it. But some Autistic people were not fans. I spoke to Haley Moss about it. Moss is an autistic attorney and activist. She said, “I think what’s problematic about the show is it views autistic people solely through a neurotypical gaze—what people want to assume and believe autistics are all about. We’re just as human as anyone else (which the show tries to capture); it just ignores a lot of aspects of who we are.”
A lot of media treats disabled people like they should be trying to be “normal.” So how do we fix that?
Marianne Eloise is autistic. She wrote an article about Love on the Spectrum for Cosmopolitan UK. She wrote, “What Love on the Spectrum has shown autistic people need, more than anything, is the opportunity to tell our own stories, to not be observed and fetishised.”
The whole disability community needs this too.
There are good examples of disability in media too. Showing real disabled people is always the best first step for good representation. We know our lives best.
We have always been telling our own stories. But we don’t always have support to share them. But that is changing. More media is putting disabled people in charge of telling our own stories.
Not all media will do a perfect job of showing disability. For example:
Netflix has a TV show called Special. It is written by and starring Ryan O’Connell. He has cerebral palsy. Watching the show makes me feel like someone else understands what it’s like to have a physical disability. It can help nondisabled people understand too.
It makes me happy to see real wheelchair users in ads. A store called Ulta Beauty had an ad with a wheelchair-user named Steph Aiello. Someone took a picture of a young wheelchair user named Maren staring at the ad in awe. I wish I could have seen something like that when I was a kid.
I also love seeing disabled models like:
The modeling world isn’t perfect. Most of the time, models have to look a certain way. They only get modeling jobs if they have “normal” good looks. But even if they look a certain way, having disabled models still makes a difference.
Nondisabled people should stop pretending to be disabled in movies and TV. Angel Giuffria is an actor with a limb difference. She told me “At this point in time, where there is such a discrepancy in representation of people with and without disabilities in the media, it’s doing a true disservice to the audience to not see accurate or genuine representation or depiction of people with disabilities in daily life.”
Giuffria hopes the media will show all types of humans one day. She said, “I think at that point, we no longer have to worry about who’s playing what or whom because it will be truthful and genuine. But right now is not that time. I think until we get to that point, we need to continue to work toward having disabled actors play disabled characters.”
We need more:
We need more disabled people in the media.
Actor Ryan J. Haddad agrees. Haddad has cerebral palsy. He told me, “Lived experience trumps any sort of research that one can do about what it is to be disabled. We have perspective as people who live disabled lives that no writers who aren’t disabled, no directors who aren’t disabled, no producers who aren’t disabled can impart to an actor who isn’t disabled. If a character is disabled and I’m disabled, all I’m thinking about is how to intentionally bring truth to the words and actions of that character. I don’t have to think about putting on disability because I just am. There’s this barrier between a nondisabled actor and a disabled character that can’t really be penetrated, though Hollywood would have you believe otherwise and gives awards to people who seemingly masterfully portray disability just because they were able to do all those things at once.”
A nondisabled actor playing a disabled character is not inclusion in the media. It’s just a way for the media to make money by showing famous nondisabled people pretending to be disabled.
One day I hope only disabled people will play disabled roles. We won’t have to fight for it anymore. I also hope disabled people will be included in media that is not just about disability.
Giuffria said “We need to better integrate actors with disabilities into all roles by opening up casting parameters and giving disabled actors the opportunity to audition for more than roles purely about disability.”
That would be the best kind of representation. The media would look like our world. It would celebrate disability as a part of what makes us human.
I am glad you read this book. But there is a lot more to learn about disability. No one can ever know everything about disability. But we should keep trying to learn. And we should take what we learn and make positive changes to how we act and how we treat people. That is called being an ally. An ally supports a group of people they are not a part of.
What do you need to do to be an ally to disabled people?
Think about why you want to support disabled people. Don’t do it just because you feel bad for us. Don’t do it because you feel guilty if you do not have a disability.
Do you want to help people with disabilities? Think about why. Reyma McCoy McDeid is an Autistic advocate. She says, “If you do not belong to a particular marginalized community and you want to help that community, why do you associate the word ‘help’ with that community? That really needs to be unpacked before you approach that community.”
Many people think disabled people are helpless. They think we can’t do things for ourselves and always need someone else’s help. You might think this too. Try to stop thinking this way. Disabled people don’t need to be saved by nondisabled people. We need the world to respect our rights.
McCoy McDeid says you should be more than an ally to people with disabilities. “To be an ally is to help people who are marginalized in some capacity to make the most of their life in this unchanged system. To be an accomplice, on the other hand, is to work side by side with people who are marginalized, to confront the system and contribute to shifting it accordingly.”
Sometimes the word accomplice means helping someone do a crime. Here it means helping people make changes.
Whatever you call it, you can help make change for people with disabilities. Here’s how.
Being an ally takes work every day. It’s not something you do once.
Here’s an example: You want to stop using ableist words. You also want to help other people learn that ableist words are bad. Some days:
Fixing what you say one time doesn’t mean your job as an ally is done. Making changes like this can be hard. It takes practice. Some days you’ll get it right. Other days you won’t. Being an ally means you keep working on supporting people who are treated unfairly.
“Nothing about us without us” is a slogan that the disability community uses. It means disabled people should be in charge of our own lives. We get left out of conversations about our lives too often. People assume we can’t speak up for ourselves. They might think we don’t have our own thoughts.
But disabled people are experts on our own lives. Don’t speak over us. Or about us. Or for us. Speak to us and with us.
Nondisabled people often say they are advocates “for” the disability community. It’s good to be an advocate. But disabled people need to be in charge. Stand with us. Don’t speak up for us without us.
If you have privilege, don’t use it to always be in the middle of a conversation. Think about who else should get a chance to speak up. This means you should:
This is something both disabled and nondisabled people should do. We need to learn when to step up and when to step back. Naomi Ortiz is an author and artist. She works on Disability Justice, intersectionality, and self-care for activists. I asked her about letting someone else speak. She said, “[It] is not a one-time thing. It’s a series of choices to build relationships, learn together, disagree without silencing the other. It’s about building up our capacity to honor difference and appreciate the messiness.”
Some trainings about disability will have nondisabled people pretend to have disabilities to learn what it’s like. They may have you:
You may think you can understand disability by doing these things. But you can’t. It won’t help you learn about a disabled person’s life. It could actually end up making you afraid of disability.
In college, the resident assistant (RA) in the dorm where I lived asked if she could borrow my wheelchair. She wanted to use it for a disability awareness event. She made an obstacle course for people to wheel through because she thought it would teach people about disability. I would have been stuck in my room while they played games with my wheelchair. This made me feel like the RA didn’t really care about teaching nondisabled people about disability. She just wanted them to have fun pretending to be me. I told her that she could not use my wheelchair.
Don’t pretend to have disabilities to learn about them. Listen to disabled people instead. You can:
Many people with disabilities take time to teach the people around them about disability. They share stories of painful things that have happened to them. They teach about ableism. They push for change. It can feel good to teach people. But teaching about disability can also be tiring. It can be hard to do it over and over again. Not every disabled person wants to teach people about disability.
So, we should give credit to the disabled people who do take time to teach others. Pay them for their work. Disabled people need to earn money too!
Being an ally isn’t always easy. You may not know what to do. You may make a mistake. That happens to all of us.
It can be hard to say you’re sorry when you make a mistake. You may get mad or uncomfortable. But think about how what you did may have hurt someone else.
Say sorry when you can. Learn from your mistake. Don’t make the same one in the future.
Mia Mingus is a Disability Justice activist. She writes a blog called Leaving Evidence. She wrote that saying sorry if you make a mistake is not enough. “True accountability is not only apologizing, but understanding the impacts your actions have caused on yourself and others and then making amends or reparations to the harmed parties. But most important, true accountability is changing your behavior so that the harm, violence, and abuse does not happen again.”
Being an ally is something you work on every day.
Ableism is everywhere. It teaches us that disability is bad. It can be hard to change how we think. Sometimes it might feel like the world will always be unfair for people with disabilities. I have felt that way.
But I remind myself that I can make small changes. I can change one person’s mind about disability. And that is a start.
I hope this book will be a start for you to make changes too. Thank you for letting me help you learn. Keep going.