What Does Disability Mean to You – Rozanne Roux

Nice to meet you, I’m Rozanne!

Hello all! I am Rozanne Roux, I had the pleasure of meeting the creator of “The Wrong Story,” Becky Hales over a Zoom call I was a panelist for regarding deaf and hard of hearing audiology students in April 2021. I am going into my second year of my Doctor of Audiology (Au.D.) program at the University of North Texas in Denton, Texas. I am hard of hearing and have worn hearing aids bilaterally since I was a few months old. As someone who is seen as different, the term “disabled” is often used to describe me when people refer to be as a person with hearing loss. Becky has asked me to share my thoughts on the term “disability” with y’all and I was elated she thought to ask me to share! Over the years I have been more or less okay with this description, here is what my personal and professional opinion on what the word eludes to.  

Image description: Rozanne stands in front of a sign that reads “UNT Speech & Hearing Center” while smiling and wearing black scrubs with her name tag and badge clipped to her.
Image description: Rozanne stands in front of a sign that reads “UNT Speech & Hearing Center” while smiling and wearing black scrubs with her name tag and badge clipped to her.

First, let’s get some facts straight…

What does the word disabled mean? Over the history of time, when referring to a difference someone may have there have been a myriad of different descriptions, even slurs to describe people with hearing loss and other differences. The terms “lame,” “mute,” “handicapped,” “disabled,” “dumb,” “r*****ed,” “crippled,” or “special needs” have all been used over the history of time. Many of these are no longer politically correct or have been removed and replaced in legislature (American with Disabilities Act changed “handicap” to “disability” in 1990) by the term “disability.” The term “handicap” refers to any physical or mental defect, congenital or acquired, preventing or restricting a person from participating in a normal life or limiting to their capacity to work. “Disability” is the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these. A disability may be present from birth or occur during a person’s lifetime.     

So, what is hearing loss? Firstly, there are different types of hearing loss. Some is more temporary and may be caused by an ear infection or impacted wax (conductive hearing loss). This type of hearing loss is usually medically treatable or goes away after the issue resolves. Others are permanent, such as the hair cells in the inner ear not being able to send information to the brain. Once these hair cells are damaged they cannot be fixed, and this what we know as “sensorineural hearing loss.” There are also different severities of hearing loss, and this continuum can be hard for people with typical hearing thresholds to understand. A common confusion is “how much hearing loss does a person have to have to be considered deaf and not hard of hearing?” This question usually prompts the “deaf vs. Deaf” discussion. A deaf person is a person with little to no hearing, whereas a Deaf person is someone who embraces the Deaf culture/community, prefers to communicate via sign language, and is proud to be Deaf.

Image description: Picture of the audiogram, the graph that plots hearing. On the top is frequency from lows on the left to highs on the right. On the side is hearing level from soft at the top to loud at the bottom. It has 7 different shaded areas showing normal to profound hearing.
Image description: Picture of the audiogram, the graph that plots hearing. On the top is frequency from lows on the left to highs on the right. On the side is hearing level from soft at the top to loud at the bottom. It has 7 different shaded areas showing normal to profound hearing.

So, is hearing loss a disability or not?

At what point is someone’s hearing loss severe enough that it is considered a disability? To be honest, hearing loss is different than most other “disabilities” in this way. Some people see it as a sign of getting older and are embarrassed by it when their loved ones and friends start to point it out. Others may resent that struggles that they face on a day to day basis and try to hide it. Then there are some people who are proud to Deaf or hard of hearing. There is a popular quote in the Deaf community, “hearing loss, Deaf gain.” This stems from the idea that they may have lost their hearing, but they have gained so much more. A language, a community, and more.

     For me, there is no such thing as disability until there is a lack of accessibility. When you watch the hit late 20th century cartoon “Scooby Doo,” no one thinks anything of Velma wearing glasses or not being able to see until the glasses inevitably get bumped off her face and she is on all-fours searching for her glasses. She can’t do anything until the world becomes visible and accessible, for her again.

Image description: Picture of cartoon character “Velma” from Scooby Doo, on her knees searching for her glasses sitting right in front of her. She has read hair and is wearing an orange dress.
Image description: Picture of cartoon character “Velma” from Scooby Doo, on her knees searching for her glasses sitting right in front of her. She has read hair and is wearing an orange dress.

For people with hearing loss, you must ensure communication is accessible to them. Get their attention before you speak, let them know when there is a change in subject, provide closed captioning, make sure you face is visible, and rephrase instead of repeat when there is a communication breakdown.

Do you consider yourself disabled?

For me personally, I do not consider myself disabled. There are things I do differently and technology that I utilize to make my world accessible to me. I wear my hearing aids from the time I wake up until I go to sleep. During my classes I use a remote microphone that streams directly to my hearing aids and have a CART (captioning at real time) provider that sits next to me and captions what is being said. In-clinic I use a different listening scope (device audiologists and hearing aid techs use to listen to hearing aids) that sits on top of the microphone of my hearing aid so I can listen to other hearing aids to ensure they are working properly.

When the world is accessible, there is no such thing as disability. Only ability.

Image description: Rozanne faces away from the camera with her head turned to the right with a soft smile. Her hair is pulled back showing her pink and white hearing aid.
Image description: Rozanne faces away from the camera with her head turned to the right with a soft smile. Her hair is pulled back showing her pink and white hearing aid.

Rozanne is an Audiology Doctoral student at The University of North Texas. You can follow her on Instagram @dr.roux

From the Teacher Archives: The Value of Relationship Building!

I recently came across a memory on Facebook:

“Started with a student in (hysterical) tears…ended with me in (happy) tears.”

Normally when I look back on non-specific Facebook memories I can’t remember what situation I was referring to, but not this one. After 7 years, I still know exactly what day this was.

I had a student who had a severe hearing loss. She used both speech and sign receptively, but expressively she primarily used spoken English. She did have a “deaf voice”, but that didn’t hold her back at all. She was completely comfortable talking about her hearing aids and using an FM system in the classroom (my only high schooler who would use one). She was the model of self-confidence, had many friends, and had no issues doing group work. All of that confidence came to a screeching halt, however, when she was tasked with giving a presentation in front of class.

She was in high school, but had only been in our school district for a year. Apparently in her former schools, whenever she had to give a presentation she just got her mom to write a note saying she didn’t have to. Teachers who likely had very little experience with deaf and hard of hearing students just assumed that this was OK or took pity on her and shuffled her along. I assume this also happened her first year with us, and the other teachers just didn’t think to ask me, as the teacher of the deaf, if that was OK. One of the major downsides of being an itinerant teacher serving multiple schools is that people don’t always think to use us because we’re not always there. But this time, things were different.

This year, I provided services for the student in her science class three days a week. As a result, her science teacher got to know me and what services I could provide. When the teacher assigned the presentation, the student told her that she was exempt, so the teacher called me. If that was an accommodation in the IEP, or a common exemption for deaf students, she wanted to respect that, but if not, she wanted this student to give her presentation just like everyone else. I explained that it was not in her IEP, nor was it a standard or acceptable exemption just because of her hearing loss, so I called her mom. Her mom did not have a problem with her giving a presentation, she just didn’t like how anxious it made her and assumed that it was a common accommodation.

For the next week I helped her prepare her presentation and we compromised that if she gave this presentation she wouldn’t have to do any more for the rest of the semester, unless she wanted to. Then the day of the presentation came and she had a full-blown panic attack. I took her out of class, which means that she missed all of her classmates presentations, but the lesson that day was never going to be about biology.

First, we went to a small empty room so she could work through her emotions and feel safe. Then I had her practice her in front of me. Then the SLP was walking past with one of her friends, so we invited them in and she practiced her presentation in front of them. Then we went to the SPED teacher’s office and she practiced in front of the handful of teachers who had their planning period. Finally we made it back to class, and I gave the biology teacher a look that said, “She’s ready to go so let her go next otherwise we may never get another chance”, and she gave me a look that said, “I’ve threatened the rest of these kids within an inch of their lives if they make fun of her and they understand” (it’s amazing the amount of information you can pass with a glance).

She was still nervous, read directly off her paper, and never looked up, but she did it. At the end, her classmates clapped, and she looked at me and smiled, which is when I started crying my happy tears.

This proud teacher moment was made possible because of relationships. The science teacher and I had a relationship that made her comfortable asking for my help. I had a relationship with the mom which made her comfortable letting us work on this goal with her daughter. I had a relationship with the SLP and the SPED teachers which made them willing to give up part of their precious planning time to help this student. The science teacher had a good relationship with the rest of the students (she was actually the teacher of the year in the district that school year) which is why they listened when she told them to be respectful of their classmate. Most importantly, we all had strong relationships with the student so that she felt safe. She was nervous, but got through it because she knew that we were all there to support her.

What is Universal Design?

Universal design could save the world. That may seem like a gross exaggeration, but it’s not.

Universal design is the practice of creating things to be accessible to everyone. There is universal design for learning, universal design for architecture, universal design for product development, literally anything that can be created can have universal design.

Some people think of universal design as just focusing on people with disabilities, or that it makes life harder for non-disabled people, but, in reality, the greatest thing about universal design is that it benefits everyone…hence the “universal” part.

Here are some examples:

Universal Design for Learning

(These are heavily skewed towards accommodations made for deaf and hard of hearing students since that’s the population I worked with, but there are a million other examples)

  • Using a soundfield system…
    • …helps hard of hearing children by presenting the teacher’s voice at a consistent volume from a consistent source
    • …helps the students with auditory processing disorder
    • …helps the students with ADHD
    • …helps the teacher keep better control of the classroom and not strain their voice
  • Using sound dampening accommodations such as placing tennis balls on the bottom of chair legs…
    • …helps reduce background noise for hard of hearing children
    • …helps kids with sensory processing/integration disorders
    • …helps the teacher not lose their sanity over noise levels
  • Using captions on all media presented…
    • …helps students who are deaf or hard of hearing who may not be able to access the information through audition alone
    • …helps the kids who struggle with reading by exposing them to more printed words with simultaneous auditory input
    • …helps the English language learners for the same reason

Universal Design for Architecture

  • Installing ramps…
    • …helps people with mobility differences have access
    • …helps parents pushing strollers
    • …helps delivery people carting stuff on dollies
  • Using door handles instead of doorknobs…
    • …helps people with limb differences, arthritis, or any other condition that makes it difficult to grasp and turn a knob
    • …helps people who have their hands full
  • Designing bathroom stalls with a visual/tactile indicator of whether it is vacant or not…
    • …helps people who are deaf, hard of hearing, or have a speech issue who may not be able to respond if someone knocks
    • …helps people who cannot see if a stall is occupied
    • …helps people who have anxiety about finding an unoccupied stall (it’s a thing)

Universal Design for Products

  • Designing a bracelet with a magnetic clasp…
    • …helps people with limb differences, arthritis, and other conditions that may impact fine motor skills
    • …helps literally anyone who has ever tried to clasp their own bracelet
  • Designing apps or software with built in dictation, spellcheck, and word prediction…
    • …helps people with written language-based learning disabilities
    • …helps people with motor issues that impact their ability to type
    • …helps people who formulate their thoughts better through speaking than writing
  • Designing packaging with unique tactile features…
    • …helps people who are blind or have low vision be able to distinguish between different products
    • …helps people who are trying to find something without turning on a light, so they don’t disturb their significant other or roommate

There are TONS of other examples, but the main point is that people tend to think designing for people with disabilities means putting in a ton of extra work for something that benefits a small amount of people, when in reality it is putting in a fairly minor amount of work to benefit EVERYONE!

So how does universal design save the world? Well first of all, it is an inexpensive and effective way at reducing the number of disabling conditions in the world. Medical conditions, physical anomalies, cognitive delays, neurological diversity, etc., those are all going to continue to exist, but what makes something a disability is not the medical condition, but a lack of accessibility. If the world is a more accessible place, then fewer people will have disabling conditions. If people are able to live more independent lives, that benefits society and the economy. In America, we spend a lot of money taking care of people with disabilities, and some of that is completely necessary, but a lot of it has to do with the fact that many people with disabilities struggle to gain employment, and even when employed they may be paid below minimum wage. This lack of accessibility and opportunities leads to many people requiring financial government assistance who likely would be able to support themselves, at least to some degree, if given the opportunity.

The other way universal design can save the world, is not just by allowing people with disabilities access to the non-disabled world, but allowing the non-disabled world to benefit from including the diverse perspectives and abilities that disabled people provide. Maybe the cure for cancer is in the mind of a dyslexic child who just needs a screen reader to peruse scientific journals. Maybe the next Oscar winning film will be written by a Deaf screenwriter after they watch a fully captioned film festival. Maybe the next innovative car design will come from a non-disabled engineer who was inspired by the design of her waiter’s wheelchair while she was out to lunch…just to be clear, I’m not saying wheelchair users can’t be engineers, it was just a random example to make the point that people with disabilities may not have all the answers, but trying to emphasize that people without disabilities benefit from making things more accessible. The possibilities are limitless, as long as we stop limiting people.

Here are some cool youtube videos I enjoy about universal design:

  • Molly Burke is a blind youtuber.  In this video she did for Allure, she talks about universal design for makeup packaging.  She has a ton of other great videos on her own channel about accessibility.
  • The “Well-Equipped” series is from Epicurious.  These videos are not specifically for people with disabilities, but there is a gentleman who is a kitchen gadget design expert who tests various gadgets and redesigns them to be more effective.  One of the tricks he uses is the “left-handed oil test” where he tries to use the gadgets with his non-dominant hand oiled up so it’s harder to grab, which simulates how someone with mobility issues may be able or not able to use it. I just think it’s a really cool idea, something I would never have thought about, and maybe could inspire people involved with product design to come up with similar accessibility tests.

So, what are your thoughts on universal design? What is your favorite example of universal design?

How to use screen time responsibly

If you read my previous post, you’ll know that I am very much against the demonizing of screen time for children. That doesn’t mean that it doesn’t have it’s faults. Screen time can definitely have a negative impact on a child’s development, so it’s important to use it responsibly. Here are a few important things to consider when using screen time (these are really tips for little kids, but I would love some feedback from parents with older kids), and a few of my favorite apps:

Model!

Kids don’t learn to read just by having a shelf full of books. They need someone to read to them and model the correct way of holding it and associating the printed word with language. It’s the same with screen time. If you want them to use a certain app, you need to show them how to get to that app and what to do once inside. If you don’t want them watching Game of Thrones, then you need to show them how to access the kids profile on the TV. There is some benefit to letting them just push buttons randomly; my kids and students have unlocked tons of cool features on my iPad that I didn’t know about because they were just tapping things with reckless abandon, but ultimately, you have to model what you want them to do.

Engage!

The problem with screen time and child development usually stems from it being a very passive activity. We have this idea that it’s just a kid staring blankly at a screen while the world passes them by. I will readily admit that sometimes that is exactly what it looks like in our house, and sometimes it’s NEEDED to decompress, but often times we use the screens as an opportunity to engage. One of the most important steps in language development is joint or shared attention. Why can’t your attention be shared on the screen? When my kids are watching Sesame Street, we talk about what’s happening on screen, I ask them to identify the characters, make predictions, summarize, make connections to prior knowledge, etc. Those are all literacy skills that we are working on even when we’re not reading books.

My son playing an interactive Osmo game on his iPad

Moderate Content!

This is obviously super important. If you don’t want your child accessing something, don’t give them access. There are parental control options, and that’s not a guarantee that they won’t access something they’re not supposed to, but it helps a lot. Plus, if you are present with them and modeling and engaging, then there’s very little chance of them accessing something you don’t want. This isn’t just for moderating inappropriate content, it’s also for making sure they don’t charge you for something or send a gibberish text message to your boss. One time I freaked out that my Amazon account had been hacked because I got order confirmations for random things I didn’t order. Turns out my two year old had a conversation with Alexa, and that’s how I figured out that I needed to disable ordering from the device.

Make accommodations!

Get some blue light blocking glasses, restrict how high the volume can go, get them a stylus, have some apps that encourage physical movement. Screen time *can* have an impact on their health, so it is important to make accommodations. But TV and tablets aren’t the only things we need to make accommodations for. If you need to get up an move if you are an avid book reader. You need to wear hearing protection if you play certain musical instruments. You need to wear pads and helmets for certain sports. We shouldn’t stop doing all these activities because of their health risks, we just need to take precautions and do everything in moderation.

Some of my favorite apps for my kids:

Logos for some of my favorite apps

Proloquo2Go – This app is actually an AAC (augmentative and alternative communication) app designed for people who have difficulty speaking. Both my kids can speak, but there’s no reason they can’t use other forms of communication. It gives them options when they can’t think of or pronounce a word, builds literacy skills as they see the symbol and text together, and teaches them that symbolic communication is valid so if they meet someone who communicates this way they will just accept it. It’s no different than teaching your kids sign language (which I also do). The app is pretty expensive, but it does typically go on sale for a few days in April and October, but it’s no more expensive, and most of the time cheaper, than baby sign language classes (not trying to discourage people from signing, though).

My son using Proloquo2go on his iPad. The message window says “stop stop stop…” on repeat

Touch and Write – Tablets are known to be the enemies of occupational therapists because they get kids pointing rather than going through the fine motor skills of writing and pre-writing. Touch and write really helps with that. It does just use your finger, but you can use a stylus to get more of a pencil grip feel. You can change the “pencil” so it looks and sounds like you’re writing with shaving cream or ketchup, which is great for my sensory child who loves messy things but hates touching them. My child refused to trace on paper until we started using this app.

Anti-stress – Relaxing Games – Ok, I realize the idea of a virtual fidget toy sounds dumb, and that’s basically what this is, but it really works! There are tons of super simple activities to do on this app that are really enjoyable and satisfying. Again this has the benefit of allowing my kid to meet his sensory seeking needs while not aggravating his sensory defensiveness. It’s also just a fun app for me to use!

Osmo games – We got the Osmo system for Christmas and I absolutely love them. If you’re unfamiliar, its a system that allows for the real world to interact with the virtual world. Kids create things in front of the tablet, and then their creations are “pulled in” to the screen. It can be expensive, but there are games for all age levels and it really is a great tool for engaging kids with screen time and also real world play.

Anything PBS Kids – PBS kids is great. Everything is free. Everything is educational. Everything is engaging. I don’t have youtube on my kids’ tablets, but I do have the PBS kids video app because I know exactly the type of content they can access. Anything that comes from PBS kids is good in my book!

My son using a stylus to draw all over my slides for a class I was taking.

What are some of your favorite apps? What tips do you have for managing screen time?

Could screen time actually be GOOD for children?

We all know that screen time is bad for child development. It damages their eyes, it stalls their fine motor skills, it impacts their communication, disrupts their sleep, and it causes behavioral problems.

But what if it were actually therapeutic and BENEFITED development?

I’m going to share how screen time has positively impacted my children. As a scientist I understand that a sample size of two is not significant, and there is inherent bias being that I’m there mom (and I want the world to think I’m doing a good job in that department), but also as a scientist I understand the difference between correlation and causation. A recent study was published about the correlation between screen time and ADHD. To be fair, the authors never explicitly say that screen time causes ADHD…they just imply it pretty heavily. My hypothesis is that screen time is therapeutic for neurologically atypical kids, and therefore there is a higher correlation because it provides them more benefit. Here is my [anecdotal] reasoning:

My child had ADHD before he had screen time.
In hindsight, we saw signs that our child was not neurotypical basically from birth. Easily overstimulated, wouldn’t sleep without complete sensory deprivation, tactile defensiveness, etc. He was having significant behavior issues by age 2, and we started discussing his behavior with his pediatrician. He had no electronic toys, no tablet, just “good” toys like blocks, books, dress up clothes, etc. We would watch TV, but he’d largely ignore it in favor of playing with his toys. It wasn’t until the pandemic hit, when he was almost 3, that we started letting him use a tablet, but we had already been going to a behavioral psychologist, an occupational therapist, and was in the process of being evaluated for special education before we gave him a tablet, so clearly the tablet was not the cause.

On the flip side of this point, our younger son does not appear to have ADHD, despite having more access to screens from a younger age than his brother. Again, I realize that’s just a sample size of two, but I’m just sharing my anecdotes.

My kids are meeting (and surpassing) their milestones.
My younger son just turned two a couple weeks ago. At his checkup, when the doctor walked in he said, “Hi doctor, there you are.” to which she responded, “Well, there’s nothing wrong with his language!” This kid has had access to a tablet for a majority of the past year and is addicted to TV (particularly Mickey Mouse Clubhouse). His older brother, who has ADHD, does have some fine motor delays, which he had before using tablets, but otherwise has met all his developmental milestones.

I’m not saying that tablets and screens caused them to meet their milestones, but it clearly didn’t harm them…I don’t know about eyes, though, so I do try to encourage them to wear blue light glasses.

Screens are helping them meet their milestones.
Ok, I know I just said that tablets didn’t cause them to meet their milestones, but I actually have seen a difference. Initially the only app I would let my kids use on my iPad was an AAC app called Proloquo2Go. It is a symbolic communication app designed for people who are non-speaking, which I used to use when I was teaching special education. Just like teaching sign language to babies enhances communication and language development (including deaf and hard of hearing babies, but that’s a rant for another day), providing them with AAC does the same thing. I do believe that having access to symbolic communication helped them develop speech.

I also mentioned that my son has fine motor delays, and the tablet has definitely helped him. I know all my occupational therapist friends are yelling at me right now, but hear me out. My child is a perfectionist, so if he doesn’t think he can do something, then he won’t do it, end of story. He knows that he struggles with writing, so he simply doesn’t. We have crayons, markers, coloring pages, an easel, dry erase boards, etc., but he doesn’t like them. However, if I put him on the touch and write app on the iPad, he can pick different textures (without having to physically touch them which is great for his sensory needs) and he will practice his writing. We also a kiddie stylus to help him with his grip rather than just using his finger. Since using the iPad to work on his ore writing skills, he’s more willing to practice writing on paper.

It’s enriching.
My kids (particularly the one with ADHD) need constant stimulation. Before the pandemic we would regularly go to the zoo, children’s museum, playgrounds, etc. Obviously those activities were sidelined by the pandemic, but even when they were available, it still wasn’t sustainable to do it everyday. For one thing, it’s expensive to go on outings, but also it would throw off routines and nap schedules which are just as important as enrichment activities.

So when we were home due to the pandemic, I relented and let my kids have more screen time. It ended up filling that void that was left by our outings really well. They learned about different places and cultures, and science and nature, and so many other concepts. I’m not saying that screens should replace hands on learning, but being able to access an unlimited amount of information and media is pretty darn cool.

It’s calming.
My kid does not stop moving. There are times he desperately wants to, but his poor little body just will not stop. Screen time is one of the only times he will sit still, and he often needs that rest. The visual and auditory stimuli are coming from a constant location, which makes it significantly easier for him to focus. The real world is unpredictable, but the virtual world can be controlled.

I also get the benefit of quiet time. I don’t care if you are the most Pinterest-perfect parent in the world, sometimes you need a break from engaging with your kids. Some kids can go play quietly by themselves, some can go read by themselves, some go watch PBS kids by themselves. Those kids (and their parents) should not be shamed for the ways they seek respite.

My youngest at age 1 watching PBS kids on his tablet

To be clear, my kids do not spend all day on their tablets. They play with legos, and trains, and dolls, and sometimes when they have spent too much time on their tablets we conveniently “forget” to charge them for a few days. We also have to make sure we use screen time responsibly. This post is not meant to say that screen time is necessary or better than other types of play, but I think it’s important that we don’t demonize it either. Screens can be valid and useful forms of play, communication, and therapies. If we want to build a more inclusive world, we have to stop labeling differences as “bad”.

How to talk to your kids about their disabilities

It can seem overwhelming to talk to your kids about their disabilities in an empowering and affirming way. Here are five tips to successful conversations:

1) Make sure everyone is in a emotionally calm state.

This conversation is not going to work when your kid is in the middle of a tantrum or manic state. It’s also not going to work if you’re exhausted and your kid is working your last nerve, or if you’re feeling depressed about their diagnosis. Everyone has to be calm and positive. It is an important conversation to have (and keep having), but if you’re not ready for it, then it’s just going to heighten whatever emotional state you are in.

2) Start with their positives!

Everyone has things that they struggle with, but having a disability means that people are paying a lot of attention to your struggles and they are going to be pointed out more often. That is why it is so important to build our kids up by piling the praise on whenever we can. Just like everyone has things they struggle with, but everyone also has things they’re really great at! Even if it’s just things like, “I love your smile!” or “You make Mommy and Daddy so happy!” it’s essential to start this conversation with something positive, and then remember to fill them with positive comments as often as you can.

3) Give them language to be able to talk about it themselves.

When I talk to my kid about the things he has difficulties with, I always ask “How does it make you feel when this happens?”. This gives him words that he can use to express himself. If your child uses sign language, use it as an opportunity to work on vocabulary. If your child uses AAC, model using their device or system to express their feelings. If they don’t have an expressive mode of communication yet, it’s still important to model that language for them.

After we talk about how it makes us feel, then we move on to reassurance that it’s fine and everyone has different experiences. If you have a diagnosis, this is when it’s appropriate to name it for example: “I know [XYZ] situation is difficult for you. That’s because you have autism. Some people are autistic and some people aren’t, and neither is bad, it just means our brains work differently.” That may seem too wordy, but it’s still important to model that language, even if you are unsure how much they are understanding.

4) Get their perspective on what they need

People with disabilities spend most of their lives being told what they need by non-disabled people. We can give them some of that power back by constantly asking for their input. It may not seem appropriate, but even if they are young, cognitively disabled, or have expressive language issues, you can still involve them in the conversation. If you are looking for something structured to help you, I highly recommend the one-pager resource from I’m Determined (http://imdetermined.org/quick-links/one-pager/).

Just know that they don’t actually have to be able to come up with anything to be able to have this conversation. As an example, this is the conversation I had with my 3 year old about his working memory.

[taking the opportunity to point out a positive trait after he remembered something that happened several months ago]

  • Me: You have such an amazing memory!
  • 3yo: Yeah
  • Me: You can remember things that happen so long ago!
  • 3yo: Yeah, I use my brain!
  • Me: Yeah, and you have an amazing brain! But sometimes I know you have trouble remembering things that just happened today.
  • 3yo: Yeah
  • Me: How does that make you feel when you can’t remember things?
  • 3yo: I don’t know
  • Me: Does it make you feel frustrated?
  • 3yo: Yeah
  • Me: Well we can work on figuring out ways to help you remember things. What do you think will help you?
  • 3yo: Maybe food!
  • Me: Yeah, eating good food helps your brain. Maybe we can also do things like having picture schedules. Does that sound like a good idea?
  • 3yo: Yeah! Can I have a snack now?

He didn’t know how to talk about how it made him feel, he may not have understood all the words I was using, he didn’t know what sort of resources work best, and he was more focused on eating. Despite all that, he knows that his mom notices his positive traits, his mom wants to help him, and his mom will let him have input about his needs. And even if he doesn’t remember this exact conversation, he will still remember all of these general ideas because…

5) Repeat!

This is not a one-off conversation. We don’t build a kid’s self-esteem from one talk, it takes lots of conversations. Again, these kids are going to have people point out their deficits more often (hopefully we can reduce that by building awareness and acceptance), so it’s important to point out their positive traits as often as possible and reinforce that the things that make them different aren’t “bad”.

I would love to hear how others have had these conversations with their kids! Please share your stories in the comments, or if you have any questions about your unique situation, let us know.

Let’s talk about: Person-first vs Identity-first language

First let’s start off with some definitions:

  • person-first language means focusing on someone as a human being before distinguishing them by their disability (or other defining characteristic). For example, “she is a person who is blind.”
  • identity-first language means acknowledging and accepting that a person’s unique characteristics help define their sense of self. For example, “she is blind” or “she is a blind person.”

So which is better?

It depends.

Let’s start off by looking at person-first language. We know that language matters, and helps shape our perceptions of the world, and that is where the idea of person-first language emerged. Disability advocates (some with disabilities and many non-disabled) really fought for person-first language in the last half of the 20th century. The idea is that by using person-first language we remind the non-disabled world that people with disabilities deserve to be treated like everyone else. The thing about person-first language, however, is that it tends to be promoted by people without disabilities (parents, teacher, therapists, etc.), but some people with disabilities don’t like this approach.

The first group that kind of rejected this idea was Deaf people. For those unfamiliar with the Deaf community, they are a cultural group who are very proud of their deafness (that was an extremely abbreviated explanation, but we can go more in depth in future posts). Deaf people embraced identity-first language because of their pride and acknowledgement of the characteristics that make them who they are. Because they are a cultural group, using person-first language would be like me saying “I’m a person with an Italian heritage” rather than “I’m an Italian-American”; it’s just unnecessarily wordy and makes it seem like I’m trying to avoid or I’m ashamed of who I am.

More recently, the autistic community has been on a mission to adopt identity-first language. They are saying that they are proud of who they are and they don’t have a problem with acknowledging their unique characteristics. Also using identity-first language helps give other people an idea that they may need accommodations and hopefully be more understanding about the unique needs of the individual.

Ok, so all disabled people want us to use identity-first language, right?

No.

For one thing, not every disability has an adjectival form. Let’s look at Tourette’s. How would you say that using identity-first language? “A Tourette’s person” doesn’t sound grammatically correct. “A ticcing person” is just describing one symptom and doesn’t give a good idea of what a person may be experiencing or needs. I just can’t think of a good way to use identity-first language with that particular disability.

Another issue is that connotation can change when a word goes from a noun to an adjective. I have anxiety, but I don’t want to be referred to as an “anxious person” because that conjures up ideas of someone who’s constantly nervous and unsure of themselves. I’m not like that at all, I actually am very confident in a lot of situations, so I would prefer person-first language when referring to my mental health condition.

What’s the solution then?

Talk to people with disabilities. Ask them what kind of language they prefer. This is called person-centered language and it’s the best of both worlds. On this blog, I will go between person-first and identity-first language. When talking about autism and deafness, I’ll lean toward identity-first language. I would love to hear from other people. What do you prefer? Do you care either way? Are there other communities where the majority of people feel one way or another? Please share your stories in the comments below!

Here are some resources if you’d like more information on this topic:

5 Reasons Why It’s Important To Talk To Kids About Disabilities?

Focusing on the things that we have in common with one another is very important for building relationships and empathy, but so is giving attention to our differences. We all notice differences, so not talking about them just leads to confusion and misunderstanding. There’s nothing wrong with being different, but if it’s something we avoid discussing, then kids (who eventually become adults) will assume that it *is* wrong. So, in no particular order, here are 5 reasons why it’s important to discuss disabilities with kids:

1) Avoid awkward situations

How many of us have stories about a kid pointing to someone in a wheelchair or with a limb difference and loudly asking, “What’s wrong with them?!”. The parent, completely mortified, hushes the kid and shoos them away. Not only is the parent embarrassed, but the kid may have a negative association with people in wheelchairs now. That interaction plants the subconscious seed that “this is something negative and shameful.”

Now there’s lots of advice out there about how to handle that situation (here’s a piece written by a wheelchair user: https://www.theguardian.com/society/2018/oct/11/dont-tell-your-child-not-to-stare-at-disabled-people-we-are-already-invisible-enough), but how great would it be if you could avoid the awkwardness in the first place? You may not be able to avoid it completely because there’s no way to teach kids about every single different person they might encounter, but the more you talk about the fact that people are different, the less different people will seem to them. One thing to encourage conversation is to read books that have characters with disabilities in them. It doesn’t have to be about disabilities, but if there is an illustration that shows someone in a wheelchair or wearing hearing aids, point that out and have a discussion, so that when they meet someone in real life, it will seem totally normal.

2) Show them that there’s no shame in being different

How boring would life be if we were all the same? And yet how many of us have, at one point or another, tried to hide something about ourselves in order to “be normal”. Talking about differences in a positive manner, shows kids that there is nothing to be ashamed of. Whether they have a disability or not, it’s important that kids realize being different is normal. For all it’s issues, social media has actually been great for helping people to realize that they are not alone in their uniqueness.

3) Help them identify how they are unique

I said it once, and I’m going to say it approximately 235,084,973,204,106 more times: everyone is different. Disabilities are just differences that medicine and/or society has deemed “atypical”. We all have things we can do and things we can’t do, and talking with kids about it, whether they have a disability or not, is a gateway to helping them identify their strengths and passions.

4) Increase self-esteem & reduce bullying

Why do kids (and adults, unfortunately) bully others? Usually it is because they don’t feel confident in themselves so they treat others negatively to make themselves feel more powerful or in control. Unfortunately people with disabilities who have very obvious differences often become the targets. If we talk to kids openly about differences and disabilities and build up their confidence, they won’t feel the need to seek confidence by hurting others.

Even if the school bully still exists, creating a generation of confident kids is going to do a lot to stop the spread of negativity. It’s like herd immunity, but for self-esteem. As more kids embrace their own differences and appreciate the differences of others, the bullies have less impact.

5) Gain new perspectives

In case you haven’t been beaten over the head with it enough, talking to kids about disabilities not only benefits the kids who have identified disabilities, it benefits the kids without disabilities, too. Learning “that person is blind and needs to listen to things to understand” or “that person is deaf and needs to see things to understand”, gets the wheels turning in a person’s head, “well how do I understand things best?” Just because someone doesn’t have a recognized disability doesn’t mean that they can’t benefit from knowing their strengths and weaknesses.

Those kids who look at things from different perspectives are going to become adults who will create a more inclusive world. They will become store managers who realize that widening the aisles will make it easier for people with wheelchairs to navigate (as well as people with strollers). They will become video producers who realize that adding captions is necessary for people who are deaf to consume their media (as well as people who like to watch things on mute). They will become restaurant owners who realize that taking measures to reduce background noise will make their patrons with sensory sensitivities more comfortable (and everyone, really).

Having unique perspectives and celebrating differences benefits everyone!