To Say Or Not To Say

I wanted to address things you shouldn’t do or say to people with disabilities. A very dear friend of mine asked me about this topic and I started answering the email but then I realized that so many people have these questions. Many people don’t even voice them out loud but I hear you anyway.

People struggle with knowing what to say around the differently abled but the best way to have that automatic skill is to understand and empathize with what that person might be feeling. This person struggles daily just to exist. The “benefits” people think that others are so fortunate to have- most people wish they didn’t even need them. We have most of the same responsibilities as anyone plus so many more. At the same time, we have a harder time accomplishing everything and easily get so overwhelmed with all of these extra responsibilities. We also have less access to resources that can make these things easier.

Constantly validating our need for any extra help with doctors visits, clearances, letters, forms, applications, months waiting on other people, that we have never even met, to decide whether to approve something to make our lives easier or if they don’t have enough validation of your suffering and just deny it. A daily fight just to prove you deserve to live. The world wonders why suicide rates are so high. People have to fight hard to live and without help, they get so tired. Most people have to prove they’re worthy of life and are constantly told and even shown they don’t really deserve it enough. We live in a world where people are concerned with building ballrooms and serving caviar on gold plated dishes while other people are getting tuna from the dollar tree for dinner and stores have baby formula in locked cases. Others buy dog houses bigger than my bedroom or entrance rugs, for people to wipe their feet on, that cost more than everything I own. Hanging art in rooms, people rarely go in, that would fund much needed medical devices for handfuls of people. Some people have several vacation homes they rarely visit while human beings, who fought for them to be able to have those things, sleep on park benches. Does that make any sense to you?

It’s also important to remember that everyone makes mistakes. Saying the wrong word is so different when it’s said either intentionally or not. It is often the feelings behind words that really matter. How another person reacts to you is also very important. Are they reacting to your words or feeling your emotions behind them? Are they hearing the literal words only or the intentions in your heart? Do you want to be friends with someone that shallow?

It is also important to understand that the world is full of different types of people, including jerks. People just assume that others can’t be jerks because they are sitting in a wheelchair?! Disabilities don’t discriminate so all of those different types of people become disabled. Any bad experience can also change a person’s mentality in good and bad ways. Just please remember that everyone is vastly different, regardless of their circumstances.

I feel like some people with disabilities become entitled jerks and the world’s response to that is usually just to let them. So they do it more and who do you think they’re around a lot? People excuse bad behavior and other vulnerable people suffer. It also changes the way others see all disabled people. It will eventually affect that person too. When nobody wants to be around them and they get depressed. Don’t accept horrible behavior just because they went through stuff! That’s no excuse! That’s only verifying that you think their situation is so horrible that it’s ok for them to act like that. It’s definitely not! Always say something! Even if the situation calls for a softer hand. Please say something! Some people get “ornery” because they are daily victims of how unfair life can be and most people see this but do nothing to change anything. Do you know how bad that feels?

Everyone has been through rough stuff. Many disabilities are invisible. Some aren’t really considered a disability at all. If you ask me, those groups are often more difficult because most people don’t get the grace they need without divulging their personal business. Wheelchairs, walkers, prosthetics, etc….. speak for themselves. Just make it a rule to treat everyone kindly. That’s all most people want. There shouldn’t be a separate way to speak to people with disabilities. Make it a habit to treat everyone like they have an invisible disability because they likely do and it’s just a kinder way to be. I know seeing a shift in how a person speaks to others and then speaks to me with a softer tone-that pity voice…..fearing every word they say might be wrong……dreading me…..avoiding me…..that different treatment is more hurtful than any word you could say to me.

Interacting with people with disabilities (should be everyone) is grounded in treating the individual with the same respect and autonomy as anyone else. Basic etiquette focuses on presuming competence and respecting personal boundaries. 

It can be tricky and scary because of the way most people were raised. Please know that we aren’t analyzing your words and won’t (apart from a few) yell at you for using the wrong words. This is so sad to me because I know so many people with disabilities who would love a new friend but ingrained fears get in the way of that. You can’t easily escape the past, no matter how fast you travel.

I personally don’t care at all! I cringe when people share lists of disability words or phrases that they hate. I’m thinking…..wait! You call yourself a warrior and tell stories about horrific things you have endured …….. then you take the time to list WORDS that hurt your feelings? Ok 

This is more my style:

But not everyone is as cool as me (I’m kidding) So it’s always good to be on the safe side, in the beginning. Especially if you’re in a professional setting. Just remember that everyone is different. If someone approached my wonderful softball friends, I know they would all be fine with any mistakes and would just offer you a beer or food. Some of them are very outgoing and some stay to themselves but you will encounter all kinds in most places.

It’s definitely not rude or impolite! Staring and invasive questions are sometimes rude from an adult, who has every resource available to them and are just being nosey, but never from a child who genuinely cares to know. Every time I see a kid staring, I wave and look away so they can study everything and maybe not be so scared of the unknown next time or if it happens to them.

Years ago, this mom moved into my building. Her boys are wonderful! I remember when they first moved in. One of them was about 3 and told his mom “I don’t like her”. She said “you don’t even know her”.
I knew, in toddler speak, that really meant that he was uncomfortable around me and all he knew was that he didn’t like feeling that way. I was suddenly the unknown and uncomfortable to be around. That broke my heart.

His mother is a sweetheart and definitely didn’t teach him to think like that but when people are segregated, we raise children to fear what we keep away-the unknown. So that ramp or widened door doesn’t only help disabled people, it’s quietly teaching the next generation inclusion, kindness and many other things.

Now this child and his brothers got to know me and proudly tell people that I’m their friend. They check packages, in the lobby, for my name and bring them to my door. If it’s a bigger box, the older brothers will knock and bring it in for me. I love those kids!

I definitely sense an uneasiness in so many people who aren’t used to being around people with disabilities. I try to put them at ease by telling them to call me “wheels” or “ironsides”  🙂

That’s what I hate. Not just that someone might feel that way but that we live in a world that instilled that fear. It should not exist. I think that’s what bothers most people. Feeling segregated from others like we’re suddenly not “acceptable” because we are different. We are still the same person inside. How do you think it feels to have millions of people so uncomfortable around you that they built big institutions everywhere just to keep you away from their eyesight? It’s not “PC” to say that you think that way now but when it was, millions did. Just because it’s considered wrong to say, doesn’t make people stop feeling that way. Changing the mindset is as important as passing laws forcing people to act a certain way.

How do you think it feels that people argue against improvements that will include you because they think the money might be better going to some statue or something equally important? To be pushed through back alleys, up garbage ramps, through basements or storage rooms, etc…..because you aren’t worth the ramp? You might be relieved that we got there but that experience stays with us, along with a ton of different emotions. To be an inconvenience to everyone and the laws show it OUT LOUD! No shame! Just flat out “YOU SUCK!” The fact that we actually need laws for people to give us basic rights and respect is so awful! That’s basically saying we aren’t equal and need special laws. The very fact that it feels normal for me to use words like “us”, “people”, “them”…..says so much! These things eventually build up and change who we are.

People hate when others see them struggle in any way. They will try to avoid those experiences, at all times, but that’s a big part of “our” life. It takes a toll on the mind. Just remember this is what the person has dealt with. Things that might make a day one of your worst, could be an average day to someone else. Your worst day could also be someone’s best. Always remember that.

Speaking of changing a person, people with disabilities usually go through many phases. These can take months, years, some of them never happen to certain people and some people get “stuck” in one phase. Everyone is different. Most notably, (this applies to people who weren’t born with a disability) there is the confusion and adjustment, your entire life just changed and you now have to learn a ton of new things. Nobody teaches you how to be disabled. Nobody taught me how to use a wheelchair or a ramp. How to get into an ambulette or bus. How to apply for help. “We” just have to figure a lot of things out that we should already know. We teach children about people who died hundreds of years ago but not someone they will meet or could become in their lifetime.

Then there’s the “why me” stage when everything slows down. You finally have a minute to focus on everything that has changed and the horror of seeing how unfair this life can be. How insignificant you are to people. We are also seeing how little we knew and wishing we could have changed things for people when we had that chance. Coming to terms that there is so much suffering around a lot of oblivious people or worse, people who are aware but don’t care.

Sitting in an office chair is ok but when you can’t leave that chair, it’s not? When I’m sitting on a couch, I’m ok but when I’m in my wheelchair, I’m suddenly someone to avoid or be careful around? Out of everything people with disabilities lose, humanity is one of the toughest.

Speaking of humanity, always address the individual rather than their companion, aide, or sign language interpreter. This is one of those things that I hate the most and happens so much!

Always ask before helping. Never assume a person needs or wants assistance. Even though you feel uncomfortable with seeing them struggle, remember it’s not about you.

Offer help naturally (“Would you like some help?”) and wait for the offer to be accepted before acting. If they decline, respect their decision. Tell them that you are there if they need help. People with disabilities have definitely become used to asking for help when they need it but please remember that their threshold of needing help might be very different from yours. Don’t tell people that they “need to accept help” or are “just being stubborn” because there are often many other reasons that you don’t understand.

Treat adults as adults. Avoid “baby talk,” patronizing tones, or overly simplified language unless a cognitive disability specifically requires clear, concise instructions.

Be patient. Allow extra time for people to process information or respond, especially those with speech or cognitive disabilities. Do not finish their sentences or speak for them. I personally love this but I’m in a different situation. Since I can’t speak, when I’m typing and people finish my sentences, it’s great because I don’t have to type everything. Especially when I keep mistyping a word or click the wrong predictive text word, erasing it and accidentally erasing the entire sentence. 
It’s rough.

When interacting with people who have visual impairments, identify yourself and where you are (e.g., “I’m Emily and am sitting across from you”) and let others in a group do the same. Do not presume that the person needs help. You can ask if they need any guidance or support (e.g., “would you like to hold my arm while we walk?”). Announce when you are leaving. Use descriptive directions (e.g., “The door is at your 3 o’clock”) for everything you do or see that you feel you might need to see in a similar situation.
Don’t grab the person’s arm. Offer your elbow for them to take instead. Always ask first.

For people who are deaf or hard of hearing-
Gain attention with a gentle tap on the shoulder or a wave. Face the person directly so they can see your mouth if they lip-read. Don’t shout or exaggerate your speech, as it distorts lip patterns. Don’t cover your mouth or chew gum while speaking.

Mobility disabilities/ Wheelchair users-
Try to put yourself at eye level for really long conversations by sitting or kneeling. Grabbing a chair is usually preferable over kneeling. Looking up is exhausting and sometimes painful after a long time. Don’t lean on someone’s wheelchair. People do this so often. It makes you feel like a piece of furniture. Sometimes it’s on a weak part of the wheelchair that will cause a person huge problems if it breaks. Getting a repair is much harder than you think. The actual repair is usually easy. It’s the paperwork and approvals that are horrible. It can take months. That’s months of extra struggle for me just to accommodate your need for a “rest”. Don’t pat the person on the head or shoulder as it is so patronizing and we’re disabled, not puppies. If you wouldn’t do it to someone who doesn’t use a wheelchair, don’t do it to anyone who is in one either.

If you offer to help push a person’s chair, always wait for a reply. Doing it unexpectedly can seriously injure someone. When you push someone, the sudden change in speed can make their head whip back and necks are fragile. When you push down on the handles and the person hasn’t shifted their weight first, that chair also might end up flipping back. I recently read a story about a person who was at an airport. Someone offered to hold his backpack and push him. She just grabbed it without waiting for an answer. This caused him to fall backwards. That’s not good. Imagine if the backpack held a medical device that was attached to him through tubes and this ripped them out. You wouldn’t just go physically pick someone up but it’s suddenly acceptable if someone is sitting?

Speech Disability-
Listen attentively. If you don’t understand, ask them to repeat or write it down. Repeat back what you understood to verify. Don’t pretend to understand if you are lost in the conversation. Don’t interrupt.

The most respectful approach, with anyone, is to follow the individual’s lead, but generally, use “Person-First” language by default (e.g., “person with a disability”) as it emphasizes the individual first. Be aware of “Identity-First” preferences:  (e.g., many Autistic or Deaf individuals) prefer identity-first language (“Autistic person”) as a source of pride. Avoid offensive terms. Do not use outdated words like “handicapped,” “crippled,” “invalid,” or “retarded”.

Avoid “Inspiration Porn”: Refrain from calling people “brave” or “heroic” simply for sitting there. This can be very patronizing. I hate when people call me a warrior when I’m doing nothing! Without knowing a thing about me. It’s an empty compliment. Just because I’m in a wheelchair? So everyone in a wheelchair is a super hero? I can guarantee you that is not true! I LOVE when people take the time to say something like that when I’m exercising or doing something impressive but when people say that just because I’m sitting in a wheelchair, it makes the words mean less when they are genuine.

Don’t over-apologize: Common phrases like “See you later” or “I’ve got to run” are fine to use around blind or mobility-impaired individuals; a long apology for these phrases can make the situation awkward. That’s so much worse than what you’re apologizing for.
I’ll accidentally say things like “I’m jumping in the shower” or “I ran to the store” and I will then point out how funny that was haha

I know that when you see a fuzzy face, it’s so hard to resist loving on them but please don’t pet or distract service animals while they are working. Remember what someone might think is a dog “just sitting there” might be a dog silently checking a hundred things. Please don’t distract them. Always wait for permission to touch them first and never insist if the person says no. It could be a dog in training and any distractions can really set them back. This is so important because you aren’t only making it harder for the animals but that can seriously injure a person. A few feet away may seem close but if a dog were to run to you, the person can end up on the floor and be seriously injured. You’d feel guilty, the dog would probably feel bad and the person would be bloody or getting in an ambulance. It’s not worth the cuddles.

Back to language…..
Why Is Disability Language Etiquette Important?
Language matters, to some people more than others. Word choices can either create inclusive or exclusionary environments, create or disrupt barriers to inclusion, uplift or demean differences, or create stereotypes about people with disabilities.

Federal laws protect the civil rights of people with disabilities; however, many non-disabled people are uncomfortable using the preferred terms “disabled” or “disability.” These terms describe a part of a person’s identity. Euphemisms like “differently abled,” “challenged,” and “handi-capable” are often considered condescending. By shying away from mentioning “disability,” we are reinforcing the notion that being “disabled” or a “person with disability” is shameful. The word “special” is a particularly entrenched euphemism that may also be utilized technically (e.g., “special education”). Disability advocates dislike the use of “special needs” because of its paternalistic nature and instead encourage the use of the words “disabled” and “disability.”

It can be difficult to recognize language that is ableist and offensive. There are numerous expressions and words that are a part of everyday language, and we don’t think twice about using them, which actually reinforces negative stereotypes, dehumanizes, and stigmatizes individuals with disabilities (e.g., “turn a blind eye,” “crazy,” “tone deaf”). It is allies’ responsibility to learn and practice anti-ableist language—the ways we speak to or about people with disabilities. The burden is on allies to relearn language practices rather than on people with disabilities to accept ableist language use.

A useful tool that helps make language more inclusive and less offensive is disability language etiquette, which should be part of the professional training, for everyone, all around the country. Disability language etiquette refers to the appropriate language and terminology used to describe individuals with disabilities in ways that promote respect, acceptance, and inclusivity.

Key Principles of Disability Language Etiquette-
Use person-first language. Advocates of person-first language believe that a person with disabilities is an individual first and shouldn’t be identified by their disability. Examples include “people with disabilities” instead of “disabled people;” “a person who uses a wheelchair,” not a “wheelchair-bound person;” and “people who are hard of hearing,” not “deaf people.” Many people with disabilities prefer identity-first language (e.g., “disabled person,” “Autistic”), which is a reclamation of disability identity and indicates disability pride. It is not always possible to know what an individual prefers, so it is preferable to begin with person-first language and then adjust according to the individual’s preferences. We should relearn new labels to reference people who need support. These are all recommendations. If you look at what I do, I’m all over the place because I don’t care about these things but some people do. With very valid reasons.

Avoid outdated and offensive terms. Be conscious of antiquated words that have negative connotations for people with disabilities (e.g., “handicapped” or “crippled”). The language surrounding disabilities has changed significantly over the years. There is an inclusive and respectful way to describe all kinds of disabilities, and there are many comprehensive lists that can guide those choices. (For examples, check out the Northwest ADA Center’s Respectful Interactions: Disability Language and Etiquette and the Stanford Disability Initiative Board’s Disability Language Guide.)

Avoid ableist language. Ableist language refers to using disability language as an insult (e.g., “lame”), using language that treats disability as something to be pitied. All cases can be dehumanizing. Do not characterize someone with a disability as “suffering” or “afflicted” because it diminishes a person’s agency, implies that they require pity, and reduces them to something that happened to them. I must say that most people with disabilities, that I know, are some of the strongest people! You might measure strength by someone’s physical abilities but most people with disabilities have faced some really tough things. Both Physical and emotional things. So, very often, people who are given respect, don’t deserve it but do deserve pity. People with disabilities are usually shown pity immediately when they are often the ones who deserve your respect. Showing pity just shows the person that they should pity themselves too.

Do not describe people without disabilities as “normal” as this implies that people with disabilities are not normal. If you must make a comparison, speak of “people with disabilities” versus those without.
The most important aspect of disability etiquette is to address people with disabilities as you would any other person. Along with the choice of words discussed above. These are some things to keep in mind when interacting with people with disabilities.

People with disabilities do not need to offer any explanation of their impairment. It is up to them what or whether to share. Even if it is a close friend, they have no obligation to answer any questions. I’ve known people for years and never asked what happened to them. I absolutely care and would definitely be there to listen but that’s not what I need to know to be someone’s friend. I don’t NEED to know anything aside from who you are now and how you treat me. I’d be interested in learning everything else but those other things wouldn’t change my desire to be your friend.

Do not presume that people with disabilities need help. Always ask before helping someone and clarify how you can best assist them. People “helping” sometimes makes things more difficult. For example, I go through the double doors of my building by pulling myself through with the other closed door, to get over that door threshold. Something you don’t even notice but is like a mountain to me. People will “help” by opening both doors and it makes it very hard for me to get in. Sometimes people will help by opening a door and putting their feet right in the way. I know how much it hurts to get run over by a wheelchair. it happens to me a few times a week. These people mean well and don’t have to help at all. Please don’t stop offering to help! Even if we say no, you just offering to help means so much!

Always treat people with disabilities as independent individuals with their own agency. For example, if a person has a sign language interpreter, speak directly to the individual, not the interpreter. Also, don’t make assumptions about what a person with a disability can or cannot do. You will likely be amazed. Not because it’s always amazing. It’s because the world teaches people that we are so incapable that it has become easy to impress people by doing anything at all. It only shows us how very incapable you think we are.

Be mindful of personal space and physical contact. When addressing someone using a wheelchair or other mobility device, offer to shake hands as you would with anyone else and make eye contact at the person’s level. Refrain, however, from unexpected touching when someone is using a cane or other assistive device required to support balance.

Most words don’t bother me but there are certain phrases I hate. I’m probably not alone here. When people say- “if I were you”….. “you should do this to make things easier”….. “did you ever think of trying …….?” Any form of those words makes me crazy! I’m always open to suggestions but when I live this 24/7 and someone starts acting like an expert on navigating my life after just stopping by….. This just feels like someone is belittling my intelligence or ability to properly care for myself. Offering to help is awesome but that’s like offering help while smacking someone.

Remember: Even if you don’t understand it, this is someone who knows how to best navigate the world in their own way. Just because it’s different from your way, doesn’t make it wrong. A big part of who a person becomes, is molded by the way the world treats them and can change the way they see themselves.

I’m definitely not an expert in this field but I wanted to share what I do know and what I personally feel. If there is anything you’d like to correct or add, please don’t hesitate to share!

I love making people laugh. I feel like being miserable doesn’t help you one bit. Life can certainly be very unfair but there are also so many good things to appreciate.

So I wanted to share this story:

For those who don’t know, I can’t speak.
Long ago, I was going to this physical therapist. He went on vacation so his colleague was filling in. Halfway through our first visit, an assistant who was very familiar with me, asked him how it was going. He said ” I don’t think she likes me”
The assistant asked why.
He said “she keeps telling me to go fu*k myself”
After a long, hysterical, laugh…..he said “it looks similar to the Italian flip off but it’s really sign language for thank you” haha