When I started Come Roll With Me, my goal was to bring about awareness and be a bridge between the abled and the disabled. Life as a disabled man has it’s challenges. As I try to navigate this world, I encounter physical barriers. There are other barriers that are not as visible. The words of others can be a barrier. These words are not only a barrier for individuals with disabilities. These words also hurt those who love individuals with disabilities. For the most part, the words spoken to parents of children/adults with disabilities are not meant to hurt.
In the process of preparing information for this blog, I came across an inspiring video of a high school football player with cerebral palsy. A plan was made to allow him to carry the football for a few steps before being tackled. The opposing team had other plans and the player ran into the end zone for the touchdown. I started reading the comments and most were encouraging, positive and supportive. However, there were also a few very cruel comments.
One man wrote, “I would’ve of tackled him and said “not on my watch” Would’ve rocked him so hard it would’ve made ESPN Top 10 and Not Top 10. No freebies in life, son. He would’ve learned the world can be a cruel place by my doing.” Another man took it even further and stated he would have “knocked the palsy out of him”. It was surprising to see many blew off these comments with “It was just a joke” “Relax, it was dark humor”. Do they assume this student can not read these comments? Or do they just not care? I have a great sense of humor. Actually, known for my sense of humor. However, I found this to be hurtful, not funny.
We are responsible for every word we type. If you would not say it out loud, you should not type it. If you would not say the words you type to a loved one, then just simply don’t type them.
Sticks and Stones
There is the childhood saying “Sticks and Stones will break my bones, but words will never hurt me”. Words may not break bones, but they do indeed break hearts. They also break spirits. As we have seen in recent times, cruel words have the ability to break a person’s will to live.
I hope that through awareness, conversations and experience we can work toward kinder exchanges. I know there are times my mom and I hesitate going certain places because we just don’t want to deal with ignorance. My mom tries to run interference when situations arise. However, in preparing for this blog I realized, there is no one to run interference for her. The words spoken to me hurts her, in addition to the words spoken directly to her.
My mom belongs to Facebook group for parents and grandparents of children with cerebral palsy. She reached out to the members with this question, “What words have stung the most and what would you have rather been said?” We were overwhelmed by the responses. Some were comments from well-meaning people. However, some comments were just inexcusable.
Many people simply don’t know what to say to a parent of a child with a disability. People simply want to reach out, but don’t know the right words. However, when you hear the same thing over and over, it is hard to see past the words to the intention.
Many of the comments are related directly to the disability or equipment. These comments come from good intentions. It does get old to be asked to race or “How fast does that thing go?”. Quite honestly, I don’t mind these comments too much. However, person centered comments rather than disability centered comments can open meaningful conversations.
Here are some examples of disability centered comments reported by parents of children with disabilities:
What’s wrong with her? ~Jenny
Will she outgrow it? ~Michelle
Even encouragement when they see my little guy walking with his crutches makes him super uncomfortable. He is very shy and likes his personal space. People are constantly down in his face telling him how cute he is or how good he is doing. Leave him alone. More attention is not what he wants. ~Sunshine
“Jasper suffers from Cerebral Palsy”. I try to say that he has, or is living with Cerebral Palsy. I sometimes joked that “I suffer from Motherhood, or from being married, that’s the only suffering going in my house” ~Tessa
Aren’t you lucky you do not have to walk? ~Sharon
My son has sleepy days so sometimes when we’re out and he’s sleeping, I hear, don’t I wish I could be napping in my chair and have someone wheel me around. I know people don’t mean anything but I would love for him to be awake/alert every day and they don’t see how hard he works when he is awake. ~Rachel
Here are examples of person centered comments or questions:
What grade are you in?
What a beautiful outfit!
I love your smile!
What hobbies do you enjoy?
Curiosity is Okay
Curiosity about a disability is not a bad thing. However, it would be nice to have a developed friendship before asking questions. Be aware of how you ask a question. “What is your disability?” is easier to swallow than “What is wrong with you?” Jadyn, who has cerebral palsy, said it best, “I rather hear, something like why do u walk differently or why do you use a wheelchair… because nothing is “wrong” I’m not broken”
Wheelchair users are not “lucky” because we get to sit. Trust me, we would rather be able to walk. Parents are not lucky to not have to “chase” their little ones. Many would sell every procession to be able to have that experience. Don’t diminish a disability or the obstacles that come with it.
Commenting on an device is okay. When talking to kids, comment of the color of the chair or braces. Or something along the lines of “Your chair is cool”! Unless you are actually challenging me, don’t ask me if I want to race. I think one of the absolute best comments I have received about my chair is from a boy about the age of four. He was super excited when I rolled past him in a store. He yelled out, “Daddy, did you see that transformer!!!”
Disabilities can be the result of the actions of others. Physical abuse, alcohol or drug abuse during pregnancy can be the direct cause of some disabilities. However, many disabilities just happen, there is no blame. Assumptions of blame can be devastating to a parent. Never assume a parent is to blame for a child’s disability.
When we reached out to the Facebook CP parent group, we were shocked and saddened by the accusations and blame placed on parents. Some of these comments were made in front of the children, which makes it even more damaging.
You know, you didn’t pray hard enough. She’d walk if you prayed harder. Her condition is punishment for premarital sex. She won’t get better because you live with a man you aren’t married to. ~Amanda
I once had someone tell me I should pray harder. That I wasn’t really believing in my prayers so they weren’t working. ~Jenny
My son went to a Christian school and someone said your dad must of been quite a sinner for you to end up like that. ~Pamela
“If your faith we’re as strong as is supposed to be, she wouldn’t be like this. You need to be stronger in your faith.” My faith is plenty strong. And God have her to me “like this” for a purpose. It’s a hard life, and I don’t wish it on anyone. But I wouldn’t change the trials and the blessings, the lessons and the grace, the mercy and the joy that we’ve received through all of this. ~Shelby
I also got ask if me smoking cigarettes cause my son to have it. ~April
Individuals with disabilities are simply people who communicate, think or travel differently. Yes, our lives have more obstacles and challenges. Parents of children with disabilities have more responsibilities, challenges and worries. However, most do not want pity. I am not sorry for my struggles, these struggles have made me who I am. My disability and my brother’s disability also shaped my mom into the person she is today. This is not to say we don’t have our bad days. However, everyone has bad days!
Trish, whose child has cerebral palsy, stated “I don’t want people to feel sorry for me because my son has CP. He’s beautiful,smart,friendly and a fantastic big brother. Actually I think I want to hear more stuff like that.” Parents of children with disabilities basically want to hear the same things any parent wants to here.
“God gives special kids to special parents”
This could also fall under the good intention category. However, it is said so often, it deserves a category of it’s own! Parents of children with disabilities do carry more worries and responsibilities. Life gives all kinds of challenges to all kinds of people, not just disabilities. No one would think to approach a person who lost everything in a natural disaster and say “God gives hurricanes to special people”
Here are other comments that parents of children with disabilities would like to avoid:
How do you do it? I couldn’t do it ~Trish (Really? What would you have done if it were your child?)
“God doesn’t give you more than you can handle” ~ Maria (My mom would disagree with this! Some days are more than she can handle! Life has a way of doing that!)
Oh, you’re so strong; I couldn’t do it, you’re amazing! ~Amanda
Here is the reality. Most parents accept the challenges of having children with disabilities. Some do not. We sadly read stories of parents who abuse or murder their children with disabilities. Some simply walk away, leaving the bulk of the care on one parent. This is the case with any parenting situation. There are parents who can handle the responsibility, some who can’t and some who fail miserably.
I asked my mom what she would rather hear. She offered these suggestions
You are a great parent.
I love how you handled that situation.
It has to be hard when your child has surgery.
You have to be exhausted, is there anything I can do to help?
My mom also suggested to just simply listen. There are days when parents of children with disabilities simply need to unload. No advice, words of encouragement or solutions…just a ear and a shoulder to cry on. Being told you are a strong or a superhero, can discourage reaching out in times of need. Just simply ask, “What do you need?”
I hate when people fall all over themselves to acknowledge my daughter in the wheelchair, but completely ignore my daughter who can walk. They are both people! They both exist! Don’t make one feel special, but ignore the other. Treat them equal, because they are. They are both humans! ~Christine
It’s not so much what is said, but what isn’t. People greet his twin brother all the time and say nothing to him. People go out of their way to avoid him, thinking that’s what’s best. They talk around him but not to him. I use every opportunity I can to educate, but there are times when you just don’t feel like going there. ~Rachel
We have twin boys, Ryan was injured at birth resulting in his CP and other diagnoses. He was in hospital for 2 years. Some friends and family went as far as saying “ at least you have half of a good thing at home” when Noah and I were discharged after delivery.~Georgie
I know my brother has had to deal with a lot in regards to my disability. He is disabled also, but not physically. There are times he feels invisible because of the attention I receive. Attention and kindness are free…spread it thick!
Not every disability is visible. These “hidden” disabilities bring about equally hurtful comments
He doesn’t look disabled. ~Leah
“He doesn’t even look sick” ~Jahriel
In my case my daughter looks (normal) Oh, how I hate that word but because she has mild left hemi. People expect her to act normal and she can’t because of the cp she also has expressive language delay, a noticeable stutter, and seizures. People don’t get why she behaves the way she does sometimes. What’s wrong with her why do you allow her to behave like that. She needs more discipline. ~Kim
Terminology regarding disabilities is constantly evolving. Not everyone who uses an outdated term does so with malicious intent. Life is about lessons and evolving, so when an opportunity arises learn from the experience.
Intellectual Disability rather than “retarded”
Physically Disabled rather than “crippled”
Mute rather than “dumb”
Disposable underwear rather than diapers in reference to older children or adults.
Down Syndrome rather than “Down’s” or “mongoloid”
Wheelchair user rather than “wheelchair bound”
Avoid the words “suffers from”, “afflicted” , or “victim” Instead, use individual/person with “insert disability”
When in doubt ask! Many parents of children with disabilities love to spread awareness and educate those willing to learn!
I have no words for the following comments other than to just don’t be cruel.
What’s his life expectancy? I said a lot longer than you if you don’t go away now ~Joan
Why did you have another one? ~Trish
Better off dead ~Theresa
So will he die young? ~ Kiyomi
Did they not pick up her brain injury on the ultrasound? Because then you could have terminated (said right in front of her) ~Kristy
Once had someone tell me that all children like my grandson should be euthanized at birth that they would be better off.~Sharon
One of my friends told me “your life is over” when my daughter was diagnosed with CP, and it hurt me so much. ~Vanita
When it comes to compassion and empathy, just remember the Golden Rule. Treat those around you as you would want to be treated. We all make mistakes and say hurtful things, even with good intentions. Learning is a part of growing. I hope this blog brings about awareness and empathy.
I want to thank all the parents who provided input for this blog. Your insight is invaluable!
Until next time, Keep Rollin’ and Keep Smilin’…and be kind!
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