Should You Use Person-First or Identity-First Language?

552
552

The use of person-first and identity-first language has been a frequent topic on The Mighty. Some readers and contributors prefer to be referred to with person-first language, where the person comes before the disability in the description (e.g. a “person with autism”). Others prefer identity-first language, which puts the disability or disorder first in the description (e.g. an “autistic person”).

The Mighty wanted to hear from people with disabilities about which type of language they prefer. We asked our readers on Facebook to share whether they favor person-first language, identity-first language or don’t have a preference. The answers we received were informative and important, and everyone agreed that regardless of what kind of language you prefer, the most important thing is to respect others for who they are.

Take a look at some of the responses below, and let us know what type of language you prefer in the comments below.

1. “I have cerebral palsy, and I prefer identity-first language. I consider my disability to be an inextricable part of my identity as a human being. It isn’t negative to say I’m disabled; it’s a statement of fact. [My disability] is a huge part of my identity and how I experience the world. To me, person-first language implies a degree of shame or negativity about disability. I embrace my disability because it influences so much of how I see and experience the world.” — Tonia Says

Language6 copy

2. “I prefer person first language. I am a person with a disability, not a disabled person.” — Barbra Dijak 

3. “I refer to myself as a disabled person, and I don’t have a problem with others doing so. Like so many things, it’s up to the individual to decide what they’re comfortable with, but as long as someone means well, it’s fine with me. I think insisting on person-first language can make a situation more awkward and makes people seem like they’re tiptoeing around you and, ironically, can make you feel more like an ‘other.’ As long as people treat me like a person first, I don’t get too bogged down with terms.” — Louise Evans

Language5_edited-1

4. “I have Asperger syndrome and bipolar disorder. In my professional capacity as a counselor, I will use person-first language if that is what the client prefers. However, [I dislike it] when people use person-first language toward me, mostly because it comes in the form of ‘correcting me’ whenever I say, ‘I’m autistic’ or ‘I’m bipolar.’ For me, I’ve come to associate person-first language as those outside the disabled community telling those inside how they should think of themselves.” — Molly Thynes

5. “I have a number of physical disabilities, and I have no preference. What matters to me is that the surrounding conversation indicates that whoever I’m talking with sees me as a person and respects me fully as such.” — Irina Greenman

6.”One hundred percent person-first. We are not defined by what others suppose to be deficits. All are differently unique. All people should be known by who they are, not what they are.” — Kirstin Pearson

Language1_edited-1

7. “I’m autistic, and I like being called that. I don’t consider it ‘identity-first’ language; it’s merely an adjective. ‘A person with autism’ feels unwieldy and awkward to me. I’m also an English professor and writer, not ‘a person who teaches literature at the college level’ or ‘a human being who writes.’ But that’s just me. I have complete and utter respect for those whose preferences differ from mine, and I honor those preferences when I’m made aware of them.” — Daniel Bowman Jr 

8. “Person first. I may be bipolar, but I would rather people judge me for me, not my illness.” — Nicole Mcgarry

Language3 copy

9. “Person first. Always. I am more than my disability.” — Jennifer M. Skains

10. “Identity first. Disability is a part of who I am. It’s helped me grow as a person and brings me together with a community. Also, it’s not my health that disables me — it is society’s unwillingness to accommodate us.” — Taylor Smith

Language2 copy

11. “It doesn’t really matter to me. It’s just commonly used English to put an adjective in front of the noun it describes. I have more important things to worry about than what order words go in.” — Kallie Locklair 

12. “I believe the group of people who actually have a certain disability have a right to say what they prefer. I prefer identity first. I am autistic. I cannot remove autism from my body. It is my neurotype. Just as I am tall, I am autistic. I do not ‘have tallness.’ It makes being tall sound negative that way. Saying ‘I have autism’ separates the autism from me. It makes autism sound negative. People can ‘have cancer,’ but cancer is viewed as negative and separate from the person. I am autistic. (I am tall, too.)” — Jenessa Dinverno

Language7 copy

13. “I usually like people to say a ‘person who is blind,’ not a ‘blind person.’ I am a person first, blind second.” — Harjinder Saran

14. “Every person has a different preference. Neither bothers me. If someone wants to call me the anxious girl, depressed girl or girl with mental disorders, that’s fine. In time, they’ll find that the anxious girl is pretty cool. I try to ask those who have disabilities or disorders what their preference is because I can’t assume either way.” — Harmony Rose Rogers

Language4 copy

*Some responses have been shortened and edited.
What language do you prefer? Let us know in the comments below.
552
552
TOPICS
JOIN THE CONVERSATION

What I Wish People Knew About Epilepsy

6k
6k

I asked fellow parents of children with devastating forms of epilepsy this question:

What do you wish people knew about epilepsy?

Here’s what they had to say:

1. Epilepsy is deadly.

  • Epilepsy can kill. Just one seizure can kill.
  • People rarely realize someone can die from having a seizure or complications of seizures.
  • SUDEP  (sudden unexpected death of someone with epilepsy) is real. More than 1 in 1,000 people with epilepsy die from SUDEP each year, according to the Epilepsy Foundation. And for our kids who have uncontrollable seizures, the risk is higher.

2. Seizures are not what you think.

  • I wish people would take all the “knowledge” they have from seeing seizures on TV and forget what TV “taught” them. Seizures do not always look like what you see in the media. Sometimes unless you know the person well, you may never even know they’re having a seizure.
  • Just like everything in life there’s a wide variety of seizures and how they present themselves. These are six common types of seizures.
  • I’ve heard people say it isn’t possibly to have hundreds of seizures a day — it is possible. With certain types of epilepsy you can have hundreds a day. Easily.

3. Epilepsy is not contagious.

  • Epilepsy is a neurological disorder.
  • You can be around people with epilepsy. You won’t catch it.
  • It won’t wipe off on you; so you can give someone with epilepsy hugs and kisses.
  • People with epilepsy love to be involved, even though some might not be able to run or participate in the same way as everyone else. Inclusion means so much.
  • I wish other parents would teach their kids that while some types of seizures are scary, it doesn’t mean a child with epilepsy is scary.

4. There is no cure for epilepsy, and treatment can be difficult.

  • I wish people realized what I didn’t when this started — that a magic drug to stop seizures doesn’t exist, and in some cases, no medication or combination of meds will ever work.
  • Epilepsy often comes with other diagnoses.
  • Our neurologist says neurology is more art than science and that’s helped me a lot… it helped me understand how not concrete this all is; it isn’t like math where 2+2 will always equal 4. It’s more like determining which painting is a masterpiece and which is crap (which is sort of a matter of opinion).
  • If you’ve heard of “this new cure” then I have too… It isn’t that we aren’t open to trying new things, we are, we spend hours and hours researching and asking questions.
  • Some children may “grow out of seizures,” but for many, it’s a disorder we will be managing for life.
  • In attempting to treat our child’s complex epilepsy, we’re constantly trying to find a balance between seizure control and quality of life.
  • People with epilepsy are often on multiple anti-seizure medications, and the side effects of these drugs are significant.
  • Seizures can keep finding a way to come back.

5. Epilepsy impacts the whole family.

  • Epilepsy impacts your plans on a daily basis.
  • We aren’t used to this. You never get used to seizures. We try to be as prepared as we can, but the seizures take their toll on all involved. 
  • Everyone in our family has to know how to respond if our daughter has a seizure. We have family meetings whenever her medication or seizures change to go over the protocol.
  • Every time my son has a seizure, I feel helpless.
  • Even after four years of my daughter being grand mal seizure-free, I still startle at every cry, nightmare or abnormal movement she has at night.
  • Epilepsy can make you paranoid. You’re constantly trying to interpret and decipher every little thing and trying to figure out what causes each seizure. It can make you feel crazy. 
  • I try not to, but a lot of times I’m just waiting for the next seizure. It’s a constant stress. Everywhere we go, we have to be prepared for it. 
  • You are never safe from seizures; there is never a time when you can be sure one won’t happen.  The fear is always there, even on seemingly good days.
  • Most epilepsy parents, I would guess, suffer from some form of seizure trauma.
  • As devastating as it is, epilepsy can also bring a family together in genuine unconditional love and support, and forge bonds between members that are unique and special. We’re all in this together for the love of our child.

Clarification: A previous version of this article incorrectly claimed six types of seizures exist, linking to a WebMD article that explains six common types of seizures. For more information on types of seizures, visit the Epilepsy Foundation.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

6k
6k
TOPICS
JOIN THE CONVERSATION

When My Nearly 500-Pound Power Wheelchair Got Stuck at the Bus Stop

54
54

It all started on a rainy day in Seattle. My little brother is a freshman at Washington State University and was back home for the first time since starting school. His best friend, Sam, who also happens to go to the University of Washington, had decided to come home, too.

So on this rainy afternoon, Sam and I were outside waiting for the bus. Well, in actuality, he stood while I sat in my wheelchair since I have spastic quadriplegic cerebral palsy, but you get the picture. As the bus pulled up, I tried to move closer to the curb, but my chair wouldn’t move. I frantically turned my chair off and then on again. It didn’t work. I was stuck.

I turned to Sam and asked him how he felt about pushing me. Granted, the bus was about to pull up to the sidewalk, so he didn’t have much of a choice, but he graciously said he would do it. All power wheelchairs have the ability to be turned on manual, which gives me the ability to drive my almost 500-pound wheelchair pretty much like any other manual wheelchair — in theory. I told Sam how to turn my chair on manual, which he dutifully did. All seemed to be going well again until he tried to push me. One side of my wheelchair moved freely, but the other side remained locked in the position. In other words, one side was moving and the other wasn’t. This made pushing virtually impossible, but Sam continued to try.

Sam is not a big guy. In fact, he’s a rather small one (I love you, man, but we both know it’s true, and I need to set the stage here). So we had a lot of rain, one large and useless wheelchair and a smallish dude trying to push said chair onto a large city bus, which undoubtedly had a schedule to keep.

By this point, we were drawing a crowd. The bus driver lowered the ramp, which conveniently landed on my foot because I was too close to the curb, and Sam was unable to move me away because we were completely stuck.

After trying several times to get on the ramp facing forward, the bus driver suggested we turn around and roll onto the ramp backwards. Turning was surprisingly easy, relative to everything else, especially when one wheel worked and the other wheel didn’t. At this point, other passengers on the bus got up to help. This was when the fun began because everyone was an expert.

A petite young woman informed me her father also uses a power wheelchair and this happens to him all the time, too. She told me the fix was quite simple; all I needed to do was turn my chair off and then on again, and it will work good as new. She kept telling me to do this, even after explained her that I already did it. So I decided to humor her. I turned my chair off and then on again, and when it still didn’t work, she sat back down.

Macy Westrick the mighty.2-001

Next, a large man bent down over me to say that I needed turn my wheelchair off. By not doing so, he explained, my wheelchair wouldn’t disengage, which was why they were unable to push me. He told me this in the voice that you use to talk to a 2-year-old when you want to convey that you are not pleased.

Did it really look like the whole mission in my life on that day was to purposely sabotage my own wheelchair so I could get the thrill of having complete strangers drag me onto a bus? No. I was just unhappy about this chain of events as they were.

My team of movers continued to literally drag me down the aisle. Eventually, they got me into the designated wheelchair spot, and strapped me down. The bus driver asked me if I have anyone to help me get off on the other end. It was a fair question, but before I can get the word “yes” out of my mouth, somebody behind me yelled out I just need to call the wheelchair tow truck.

I really, really, really sincerely hope that I’m stating the obvious when I say a wheelchair tow truck doesn’t exist.

The rest of the ride went along smoothly, and I’m happy to report that my wheelchair even decided to start working again about halfway through the ride.

Now, I probably sound really ungrateful by criticizing the people who genuinely tried to help me. Don’t get me wrong, I really am grateful and I don’t know what I would’ve done without those people, so if you’re reading this and you’re one of them, thank you, truly.

That being said, I will leave you with this piece of advice: If you see someone with a disability who may need assistance, please do so, because, chances are, they really do need the help. But don’t decide that you know how to fix the problem, unless, of course, you actually do.

Follow this journey on Diary of a Gimpy Kid.

54
54
JOIN THE CONVERSATION

This Documentary Shows What It’s Like to Be Young and Have Epilepsy

145
145

Worldwide, about 50 million people live with epilepsy, a chronic brain disorder that causes seizures, according to the World Health Organization. A ton of lifestyle adjustments need to be made when a person has this potentially life-threatening condition.

In its new documentary, “Epilepsy and Me,” BBC Three, a channel in the U.K., is taking a look into the day-to-day lifestyles of young people with epilepsy. “Epilepsy And Me,” which aired Monday, is part of BBC Three’s “Defying the Label” season, which features 15 programs examining life for young people with disabilities.

The character-driven observational documentary illustrates what it’s like to live with the invisible, often misunderstood disorder.

BBC Three also posed a question to its viewers on Twitter while the show aired: What’s it like growing up with a hidden disability?

People responded, sharing their personal experiences with epilepsy and thoughts on the new documentary.

“Glad they’re talking about the different types of seizures, and that we all don’t need to be shielded from flashing lights,” one Twitter user wrote.

“#EpilepsyAndMe showing that epilepsy isn’t just people falling to the floor and shaking. Should be compulsory viewing. #putsinperspective,” another user wrote.

“Epilepsy will never define us!” one user exclaimed.

You can watch “Epilepsy And Me” through BBC iPlayer if you live in the U.K. Check out a preview of the show that features Jack, who has to be supervised on a date incase he has a seizure and needs medication.

145
145
TOPICS
JOIN THE CONVERSATION

How I Helped Another Parent When Her Child Had a Meltdown

384
384

I was at an IEP (Individual Education Plan) meeting for my son, Sebastian, who has autism spectrum disorder. During the meeting, while the coordinators are putting together their findings and the paperwork for you to review and sign, they place you in a room with other families. One time, I shared the room with a young lady who had a newborn and a 4-year-old daughter. Sebastian was also 4 at the time. However, I noticed she was a little higher on the spectrum than he is.

The little girl and Sebastian began to play together and she started to play a little roughly. I felt she didn’t understand what she was doing, so I didn’t make a big deal out of it. They’re children, and it’s to be expected sometimes. Her mom asked me if Sebastian had autism because of the flapping he does and the fact that he’s nonverbal. I told her yes, and we proceeded to talk about how smart our children are despite what others might see. We also began to discuss how difficult it can be sometimes, and the stares we get when our children make certain noises or exhibit certain behaviors deemed “not normal.”

As we continued talking and our little ones continued to play, her daughter hit Sebastian in the head with a ball or something, and she went to give her a time-out. Her daughter began to have a meltdown and the mom looked so uneasy. As she sat on the floor cradling her daughter while her daughter struggled to get loose, I came over and sat down on the floor with her and began to share some of the things I learned from attending therapy with Sebastian. I explained to her that trying to control her meltdown wasn’t going to work; it would only make things worse. I told her to allow the meltdown and then when she calms down, explain to her why you wanted her to sit for a moment.

We continued to talk and share information. I told her about places she may want to check into for assistance. She was so grateful and wanted to keep in touch. I gave her my email address and told her she could contact me anytime because we all need to support each other.

As I was sitting with the parent, one of the IEP coordinators came in and saw what took place. She pulled me to one side and said, “That was a great thing you just did. We do not have many parents that will sit with one another and try and help each other deal with situations such as the one I just saw.” She then gave me a hug and said, “We need more parents like you in the schools to help parents who might be struggling with a child with special needs.” I thanked her and explained to her that we need support and it’s difficult to get. As the parent of a child with special needs, my responsibility is to support those going through the same thing.

I want to be as supportive as possible to parents like me because there are so many obstacles we already have to face in this “normal” world. As an advocate, parent and student of a child with special needs, I stand with them to offer support, guidance and understanding. Together, we can make a huge difference in how our children are viewed and treated in this world. We are their voice!

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

384
384
TOPICS
JOIN THE CONVERSATION

This Man With Down Syndrome Is Now a Sworn-In Reserve Officer

5k
5k

There’s a new officer patrolling the streets of Minneapolis.

In June 2015, Sam Hesla was sworn in as a reserve officer, KSTP News reported. Hesla, 24, is one of the first reserve officers with Down syndrome to serve in the country, according to the outlet.

Before earning his title, Hesla completed 12 weeks of training in which he mastered skills like radio communication, CPR and traffic directing. Though Minneapolis reserve officers don’t carry weapons, their duties include crime prevention, monitoring events and backing up the Minneapolis police department when necessary, according to the Minneapolis government website.

Now that he’s achieved his lifelong goal of becoming an officer, Hesla is thrilled to serve in his community.

“I like helping people. I want to take care of people,” Hesla told KSTP News in the video below. “I want to risk my life to take care of others. I care more about other people than I care about myself.”

Hear more of Hesla’s story in the video below.

5k
5k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.