Cartoon of a woman and her daughter shopping the daughter points and asks why another child is in a wheelchair.

'The Courage to Be Kind' Teaches Kids About Disability and Inclusion


Rena Rosen knows what it feels like to be stared at, and it’s a feeling she doesn’t want other children or adults to have to experience.

“When I was growing up, my family and my community treated me with kindness. However the greater community did not react in the same way, and eventually my smile and wave stopped working with each stare and each comment,” Rosen, who grew up with a facial difference, told The Mighty. “I had always wished there was a book that accurately portrayed physical differences in a kid-friendly way while also addressing the needs of the parents and educators as how to facilitate conversations and promote positive inclusion and interactions.”

To fill this void, Rosen and her friend Jenny Levin, both educators, co-wrote “The Courage to Be Kind,” an illustrated children’s book that educates kids about a number of different physical differences including Apert syndrome, spina bifida, cerebral palsy, Tourette syndrome, alopecia, birthmarks and dwarfism.

The book features comic strips that teach children how to interact with people with disabilities or differences – namely, not to point, stare or be rude. “Children notice differences in a very natural and curious way. At times a child may say something that could sound blunt when in actuality they are doing so with complete honesty and a yearning to understand,” Rosen, who runs workshops about treating others with compassion, explained.

Instead of “shushing” children when they ask questions or point, Rosen said it’s important to explain why pointing and staring is rude, and promote inclusion instead. Speaking from her own personal experience, Rosen said it’s better to approach someone with curiosity and kindness than it is to ignore them or be rude:

At home a parent can explain that all people have differences, while some are more noticeable than others and use their best judgment as to how to explain that particular difference in the most honest but age-appropriate way.

Rosen and Levin’s book also features informational pages that give an overview of each condition and show photographs of children with each difference or disability. “Labels are meant for objects and categories of things, not people,” she said. “We all have such a variety of abilities and differences. It is important to remember that their is a person behind a facial difference or a disability.”




What My Dad Taught Me About Judging Others' Disabilities


On December 4, my dad passed away suddenly after a moderately short battle with a chronic illness. The week of Thanksgiving, my family was told he was in complete organ failure. His body was filling with fluids released by his liver; his hernias had shifted and fluid was going into his lungs. We knew he was not going to be with us for more than a year, but were not prepared when he fell, causing his body to shut down. He died quickly, and I’m thankful he did not have to suffer more than he already had.

In reflecting on my dad’s illness and the effects it had on his body, I realized I’d made quite a few mistakes during his last year – especially within the months leading up to his death. When people see me park in disability parking, it is obvious when I get out of my van that I’m honestly, legitimately and legally permitted to park there. When I use designated stalls in restrooms, no one questions my necessity for those accommodations. My illness and my disability are not invisible. Rather, they are glaring and direct.

My dad, however, did not use adaptive mobility equipment until one month prior to his passing. At the end, he had trouble walking and required the use of a rollator. Before that, when he’d park in a designated spot, here is what people saw: an obese man with no clear physical limitations walking into an establishment. There were times, early on, that I (embarrassingly enough) bristled when I saw him park in disability parking. Before knowing what was wrong with my dad, I thought he used obesity as the criterion to gain certain accommodations. I hate that I thought these things and am loathe to admit them, but am sharing in hopes that someone who reads this will better understand my overall point.

My dad was actually not obese. He had several large abdominal hernias and as I’ve previously stated, his body was filling with fluid. If a person were to look at his face, arms, legs and neck, it would be obvious that he was in fact thin. The “weight” he carried was solely in his torso. Furthermore, to a stranger it may have seemed that he walked just fine. But those of us around him watched helplessly as each step caused his breathing to become more and more labored due to the fluid build-up in his lungs.

There are times when people make assumptions about what it means to “look sick.” Assumptions are also made about what qualifies as a “disability.” I’ve heard people grumble about “that heavy-set woman using the accessible stall” or “the fat man who just needs to lose weight so he won’t be disabled.” Those exact thoughts haven’t come into my head, but I’ve already admitted that I myself, as a member of the disabled community (and one who doesn’t need to carry a membership card since I’m rolling along through life) have also wondered why a seemingly healthy and able-bodied individual is using a space or stall or other modification meant for “us.” This is plain prejudice, I admit. It’s stereotyping, generalizing, assuming and jumping to conclusions about things I have no right to nor expertise in!

Whether you are chronically ill, disabled or healthy and able-bodied, I ask that we all cease to pass judgments on people who use services for the disability community. There’s usually a lot more to the person’s story than their body is able to convey to our untrained eyes.

Lylly's father Rob Sasser.

In Loving Memory of my dad, Rob Sasser, who taught me a lot, even when he didn’t know it. May 12, 1952-December 4, 2016

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To 'Normal' Americans, From a Woman With a Disability


Dear “normal” Americans,

Disabled… I can clearly remember the first time someone called me this. That word stung; it cut deeply within my soul. I didn’t want to be disabled. Growing up in American culture, those with disabilities are often frowned upon. Others assume we are not able to have an impact on our communities. That we need assistance with every little task.

Such a mindset can bring pain and heartache to the disability community. We, the disabled, are the largest minority group within America. Let our voice be heard. I know many of you may not know the culture of disability, and I wish to impart the lessons I have learned from being in a wheelchair for the past four years.

1. I don’t want to be a project. I want to help and bless my community.

2. Allow my voice to be heard. If I say something, please listen.

3. Allow me to ask for help. This may seem strange, yet allow me to have the dignity of asking. If I need help with my wheelchair, I will ask. If I need assistance picking up the pen I dropped, allow me to ask for help.

4. Don’t assume I am doing well because I am walking. Please don’t ask me why I am walking one day and using my chair the next. Living with a chronic illness, sometimes I feel wonderful and other times I barely have the strength to pull myself out of bed. Yet the position of my body does not change my sickness. So just don’t ask. If I want to share why I am walking or how my sickness is affecting my body, I will tell you.

5. Just be my friend. I am human. I want to be loved for being me and for being nothing less.

Thank you for your time,

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How You Can Help Me, a Person With Selective Mutism


Selective mutism is a disorder preventing someone from speaking in at least one social situation.

Symptoms of selective mutism include:

  • incapable of speaking in social situations
  • withdrawal
  • no or little facial expressions
  • avoiding eye contact
  • stiff movements
  • isolating
  • worrying more than most people their age
  • difficulty expressing feelings
  • fear of social embarrassment
  • social anxiety

My name is Alysia. I have had selective mutism all my life. I have faced many challenges in this time. The most difficult thing I have had to deal with is people who do not understand. From teachers and students to “professionals.” I have been told/forced to speak on numerous occasions. Here are a few things someone has said to me:

“Has the cat got your tongue?”

“Are you lethargic?”

“Are you lazy?”

“You need to get tougher skin.”

“Do you not understand English?”

“Just say one word.”

“How are you going to get from point A to point B if you don’t speak?”

“If I do the chicken dance, you will have to speak to me.”

“If you are a lonely character, let’s put you in a corner.”

“Hi… Oh, I forgot, you don’t talk.”

And many more.

Situations where I get forced to speak are uncomfortable and upsetting. Therefore, I ask you to have full understanding of this condition to decrease the amount of times a selectively mute person is put in this situation.

Here’s how to help me as a person with selective mutism:

  • do not force me to speak
  • stay calm around me
  • do not talk about my anxieties/struggles in public
  • include me in activities
  • treat me as you would if I didn’t have this condition
  • don’t ignore me
  • ask me indirect questions that don’t require verbal speech
  • if there is a verbal response, don’t make a big deal of it
  • never give up on me because one day I will feel able to speak to you; do not rush me!

Knowledge and understanding are necessary. Let’s raise awareness of selective mutism!

Get informed, educate yourself and tell someone about it.

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How Obamacare Saved My Daughter


Losing the Affordable Care Act would be devastating for my family. Without it, my daughter would most likely be dead.

At a mere two weeks of age, Namine needed heart surgery. At six months, she needed heart surgery again. She required much early in life — in terms of medical procedures, as well as equipment — and she was not the independent, thriving child she is today. She had a tracheostomy, a stomach feeding tube (known as a g-tube), and more equipment than any uninitiated parent would know what to do with. (I mean that literally; my wife and I went through actual medical training before we were allowed to bring our daughter home after several months in the hospital.)

I have private insurance through my job. It had a cap of $2 million, and Namine — with her as of yet indefinite stay in the hospital, plus surgeries, scans, and doctor consults — was fast approaching that cap. And then when I received a phone call from my insurance that informed me the cap was being lowered to $1.5 million, I didn’t know what we would do. Namine would obviously be dropped, and then what?

It was fortuitous that the Affordable Care Act went into effect when it did because suddenly, miraculously, Namine had coverage again. There were two results, from which we as a family benefited. First was the fact that my private insurance could no longer put a cap on any of us, meaning Namine was back on my plan. The second result was that Namine had state insurance — Medicaid — which covered everything my private insurance did not. As long as she was considered disabled, she would always be covered*.

The end result of Namine being covered by the ACA was that no matter what procedures she needed — and she has needed a lot over the past seven years — of all our worries, that she would not be able to have any of them was never one. That, to me, was always the point of the ACA: You’ve got enough to worry about. Let us take care of the bill, while you take care of your loved one.

*Being “considered disabled” is really more complex than you’d think, even for Namine, who needs a wheelchair on a daily basis. There are also other qualifiers (and ways to get denied) and other fights to be fought regarding insurance. But that’s a different discussion for another blog post.

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Talking About Disability With Able-Bodied Children


A huge part of creating an inclusive, supporting environment for children with disabilities is making sure their peers are in the know about how disability works. My grandson, Elijah, lives with cerebral palsy, and it’s important he grows up around adults and peers who cherish him as a person, not as a pet or a project. I want everyone Elijah interacts with to be mindful of his limitations and cherish him for the fun little boy he is.

You may initially feel uncomfortable talking with a young child about a classmate in a wheelchair or a classmate with learning differences, but creating a world more receptive to people with differences starts with young people. Rather than teaching a child to ignore a person with a disability, or worse yet, treat a person with a disability condescendingly, here are some ways you can talk about disability in a way that encourages interaction and acceptance.

Address the difference.

Children are naturally curious and may stare, gawk, or point at peers who have obvious physical differences. Use the opportunity to educate on disability, not bury the topic. When children are taught to “ignore” disability, they neglect the importance of inclusion. Teach them to embrace differences, ask questions, and engage with people who are different.

Talk straight with your child.

Use names for devices and briefly sum up their purpose. For example, if your child is curious about a person with an oxygen tank, explain plainly and without emotion or speculation the person may need some extra help breathing, so they use the tank to help. Using appropriate and respectful words to describe disability will instill respect in your child. Some words are offensive, such as, “crippled,” “retarded” or “deformed.” Instead, teach words like, “different” or “disabled” to ensure acceptance rather than condescension.

Point out similarities.

Rather than dwelling on how children with disabilities are different from able-bodied children, talk about the ways all children are similar. Children like to have friends, play games, form opinions, pet puppies, watch movies and other common activities. Spending time on similarities reinforces inclusion, acceptance, and empathy. Immediately discourage bullying or jokes; children with disabilities are commonly considered “easy targets” for verbal abuse.

Point out what is hurtful.

Tell your child it would be hurtful if someone teased them for something uncontrollable — such as their hair color or name — so it’s not nice to do it to someone who has a disability. Your main thesis when discussing disability with your child should be that, no matter a child’s condition, they’re still a person who deserves respect and acceptance.

Model respect.

Taking the time to teach and model respect towards people with disabilities will help develop the same attributes in children, reduce bullying, and create an inclusive culture that benefits both able-bodied people and those with disabilities.

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