Category: Community

World CP Day

Stephanie G. Cox, M.S.Ed

Happy World CP Day! I’m discovering that aging with CP is hard. A lot more pain than I expected. However, I think back on my birth story and how I didn’t breathe for 40 minutes. The doctors almost let me go but my dad wouldn’t let them give up. Don’t go thinking my dad was a hero and I don’t know why parents would treat a child like me the way my parents treated me at times, but 42 years later, I’m still alive, married, and have my Master’s degree. I’m an author. I’m so much more than what people give/gave me credit for.

Cerebral Palsy is the most common lifelong disability in the world, and yet, we still don’t have federal funding for research on it. Many of my doctors have to be told more about it from me. And there’s limited resources available once one becomes an adult.

In the documentary, “Crip Camp,” it was revealed that back when Polio was still disabling children, “the Polios” were above “the CPs” because people who had Polio looked “more normal than the CPs.” It is crazy how much we still have to advocate and fight for ourselves. I truly feel like we are going backwards right now with the disability community because 6 out of 10 people with disabilities have died of Covid. It’s so scary to think people are okay with this and even want to not have to look at or deal with people like me because we’re so different and we need a lot more help to live.

I have an announcement regarding my new children’s book, My Name Is Steph. SEE ME! Please watch the following video that I made.

I hope I can get back out there and get this children’s book out to fight eugenics and other ableist things that even without Covid we still have to deal with daily.

July is Disability Pride Month

Stephanie G. Cox, M.S.Ed

How many of you are aware that July is Disability Pride Month? I only found out a couple of years ago. We hear all about the different minority groups months and diseases, yet, we don’t hear about the disabled unless we know someone who’s disabled or loves someone with a disability. Disabilities affect more people than we realize, and yet, we are still ignored for the most part.

I don’t think I have ever felt ashamed of my cerebral palsy. Yes, I have wished that I didn’t have it at times, but I don’t focus on it. Unfortunately, I have felt shame vibes at times from my family, not from my grandpa though. I do get self-conscious at times despite giving the air of confidence.

In fact, I will be honest about my intense anxiety about my book coming out because it has become a totally different world from when I first wrote it. I’m wanting to get out there with my book but I have to still worry about Covid in a society that is so quick to move on and accept that the vulnerable people may still be hospitalized or die from it. I’m afraid of all the eugenics going on in the world right now, especially the right wing cult…But the fact that even the people who used to take precautions against Covid have stopped is unknowingly spreading the eugenics. Why? Because people who are afraid of what the virus may do to our already unique bodies are even more left behind by society. Yet, I listen to the Calm app and I focus on what I have to do to protect myself from the hate as well as find people who are willing to work with me for in-person events. If people are not willing to mask and work with me, then they don’t deserve to meet me.

I believe that I have to keep educating people about disability. We need to put disability in the foreground because all the rights that are being seriously threatened by the right wing are just a preclude for more disability rights and help being taken away too. I challenge you to look into disability history. I challenge you to see how much adaptive equipment for the disabled costs. It’s not easy to get the help we need.

My cerebral palsy is a part of me. I’m proud of myself for fighting through all the battles I have fought and will continue to fight until I die. I’m disabled and I am proud to be who I am and see things that others are too busy to stop and see.

From Facebook

My Children’s Books and Teaching Children about Disabilities as well as Encouraging Children with Disabilities

Stephanie G. Cox, M.S.Ed

It’s been a while since I’ve written a blog post. This is due to the fact that I have been busy working with a wonderful illustrator that has finally completed the illustrations for my children’s book about my life with severe cerebral palsy. This was a very traumatic experience for me as “friends” wouldn’t finish the book’s illustrations in a timely manner. I was able to raise the money back with GoFundMe and the book is completed! George Franco is an amazing illustrator. I’m beyond grateful for his work and commitment to the project!

As I have written in previous posts, the book is based upon my life with severe cerebral palsy. We used actual photos of me both as a child and adult in order for the illustrations to show how I require very specific seating and care. It also shows how, with the help of my family and friends, I can overcome most obstacles to do what I want. It might look different but there’s usually a way around things.

I have yet to see any other picture books that accurately portray severe cerebral palsy. That’s why I wrote this book and was very specific about the illustrations showing how my wheelchair always has a lot of support to hold me in the proper sitting position as I can’t sit up on my own at all. I would fall right out of a standard wheelchair.

In the current environment of a group of people who are hateful toward anyone who doesn’t stand/measure up to their “agendas,” it is even more important to have a book that is all inclusive. It has every race, ethnicity, ability, and gender in it. I believe it is vital to fight for equality for human equality! Everyone is human and we are all equal!

I also want children like me to have a book that is inspiring to them. I want a child with any severe disability, especially those with cerebral palsy, to know that there’s hope. Even if the adults around them are telling them they will never achieve their goals and dreams, they can look at my book and just keep fighting for what they want to achieve!

Compassion is something that is in short supply in society today, and yet, there are many compassionate people out there who are advocating for people who are being oppressed and treated horribly by the new right-wing movement. It’s truly scary. The most abused children are often either disabled or in the LBGTQ+ communities. I want to stop this abuse from happening. I want today’s children to be taught compassion and kindness for all!

Unfortunately, Covid is still a problem for many in the disability community. We often have reduced lung capacity, asthma, and other health issues that are still making it more likely that we would get severe Covid and potentially die. Most of us are up-to-date on the Covid vaccines but some of us, such as myself, can’t swallow Paxlovid because the pills are too large and can’t be crushed. People are moving on from Covid and just don’t think about those of us are still going to great lengths to avoid getting it until there are better vaccines and treatments available for everyone to take and be okay. While my book is about my life pre-Covid, I still hope to use it to help people who are willing to truly listen and understand in order to be more aware of the vulnerable. I cling to hope that I will be able to live my life as I did prior to the pandemic someday soon.

Teaching children accurate information about disability is crucial in keeping society inclusive to all. Here are some examples of how to teach children about disability:

  • Instead of telling children not to stare, talk about how cool the wheelchair is or how incredible it is to walk with crutches. Point out how the person is also alike. For example, “It looks like her favorite color is green.”
  • When children ask “What’s wrong with him/her,” tell them that nothing is wrong with the person. The person just has a different body and/or brain and this is okay! We are all different and unique.
  • With Covid, please stand a certain distance from the person and ask him/her if you and your children may ask a few questions. I love answering questions from children! I also want adults to ask me questions instead of just assuming things about me that may or not be true.
  • Watch TV shows and movies about/featuring people with disabilities. Some examples of TV shows and movies are Speechless, Born This Way, Love on the Spectrum, As We See It, My Left Foot. Just search any streaming service and you’ll find all sorts of great shows and movies about and/or with people with disabilities. Some are more appropriate for younger audiences, of course, than others, but it’s important to let children learn about disability.
  • Read books about disabilities. There are tons of books for every age about different disabilities.

Love over hate is the goal we’re aiming for. Equality is also the aim. Nobody is better than anyone else; we all have human blood running through our veins!

I will keep you posted on when my new children’s book is available. Thank you so much to everyone who donated to my GoFundMe campaign last year!

Open Butterfly Wings

Stephanie G. Cox, M.S.Ed

March is Cerebral Palsy (CP) Awareness Month and the butterfly is the symbol for it. It makes sense because we are butterflies but our wings are usually clipped by society. Sure, we have limitations. For me, I have a lot of limitations because of my CP but I don’t like to focus on them. I like to live life. However, I have seen just how much humanity can clip wings with their ableist views on a virus that is killing people, especially us with cerebral palsy, who are high risk due to the muscles in our mouths, throats, and core that negatively affect swallowing and breathing. Even though I have become a “shut-in,” I truly try not to think about what I can’t do. It’s a bit harder, but this is not something that I choose to feel sorry for myself.

I do, however, try to relate to people why we are the way we are in this current situation. I require care 24/7. My husband does it all with zero help even if he is really sick or really hurting. He has no choice. Here’s a post I wrote about cerebral palsy last year.

It isn’t just now that society has clipped my wings. I had to prove myself from Day One. They didn’t think I would live (and really, I shouldn’t have with not breathing for 40 minutes), and if I did, I wouldn’t amount to much. I was in the NICU for almost two weeks.

Growing up, I had to prove myself to teachers and my peers. I was always the first person with severe cerebral palsy to do anything. I was finally allowed to be in regular classes when I was in 3rd grade. Even into college and grad school, I had to prove that with the correct accommodations, I could successfully complete the early childhood education program.

Even though I have spent most of my 40 years in school to have a career helping children and families, I still have not been able to get that career going like my peers have and I do have some shame and anger about this. But I’m refusing to give up.

Also, most people have no idea that the adaptive equipment I need isn’t cheap. It’s extremely expensive and I remember my parents fighting with their insurance companies that I had a medical need for a toilet chair or a bath chair or a wheelchair. Now I’m forced to pay for these things out of pocket and I had to have a Go Fund Me for my wheelchair in 2014 after my 19-year-old chair was so worn that the plastic was hurting me with no more padding.

There’s so much of my life that people don’t see and I want to be seen as a competent person who has unique needs. I still have to prove that I am a competent person because some people automatically assume that I am intellectually disabled. I love how children freely ask me questions and want to understand what is going on. Young children don’t judge me. They are curious. Older children can become bullies and I want to prevent that. Then there are a lot of “little me’s” that need another book that they can read and look at the pictures.

For me, growing up, the only book that I could relate to was called, Howie Helps Himself. The only problem was that they had him in a standard wheelchair, and at the end of the book, Howie pushes the wheels of his wheelchair to make it move. It kind of made me feel bad because I never was able to push myself.

My book shows my wheelchairs with my supports. It shows how I am able to do some of the same things that everyone else can do like love and feel and be a friend. It also shows real life things that I deal with every day such as knocking stuff over, being fed, falling over and needing help to get back up, people treating me as a “child.”

I truly believe that this book will help teachers and families teach children about disabilities and differences as well as similarities. It will also give hope to children with cerebral palsy as well as their parents and families.

Unfortunately, people like me are prey for people who think they can manipulate and use me until they reveal their true colors to me and I, and they, walk away. Thus, I have been ripped off twice now trying to get the book illustrated. I am an honest, caring, trusting person and I paid for each illustration as I approved them. All of the illustrators were people we felt close to and truly trusted. Lesson learned.

For Cerebral Palsy Awareness Month, I am asking for more people to help open butterfly wings by participating in a CP Awareness Month Facebook event and to please share as well as donate to my Go Fund Me page to keep raising the money we’ve lost in order to pay my new illustrator. I don’t know the illustrator and the contract is extremely specific. I have learned to guard my heart and my wings because I’m a free spirit. The illustrator will be paid after everything is completed and approved.

I want to open more wings despite the limitations.

20 Years Ago

Stephanie G. Cox, M.S.Ed

Twenty years ago I was about to turn 20-years-old and a college student.  I was newly engaged and my now husband was my personal aide in school.  The 9/11 attacks happened while we were on the way to school that morning.  We had no idea what happened until we walked into the office where I was allowed to get extra time to get my homework done due to my severe cerebral palsy.  Everyone was quiet and in shock.  My tutor asked if we had heard what happened and we said no.  She told us and led us to the television.  We watched in shock as the towers were on fire and eventually fell.  It felt like I was watching a movie.  I didn’t know how to process it and trying to get my work done was stressful.

As time went on and I watched it all unfold, I got emotional. And my birthday 48 hours later was somber despite my turning twenty.  Everything was somber for a while and the skies were so quiet from the airplanes being grounded.  We didn’t know what was going to happen next.  It was a very hard and scary time.  My husband’s friend from grade school was one of the casualties of that day.

But what I remember most, except for a few conspiracy theorists who were ignorant, and still are, about the attacks, the country actually came together.  People were kinder. Drivers had more empathy for each other.  Definitely a total contrast from today’s current reaction to the pandemic.

Children got comforted and observed the adults coming together to help each other deal with the trauma.  Oh how I long for that type of empathy and compassion again.  Social media is probably going to be the destroyer of the world since it allows people to become even more ingrained in their beliefs and argue with everyone.  It is now spilling over into the real world.

Tennessee teen talking about grandma who died of Covid heckled by adults at school board meeting.

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“Let The Children BREATHE!”

Stephanie G. Cox, M.S.Ed

As Covid is raging on and affecting our children more due to the virus mutating and “learning” how to infect yet even more vulnerable people, once again we hear parents who don’t care about the well-being of their children or others scream, “Let the children breathe!”  Some states have enacted  laws banning schools from mandating masks.  Thankfully,  an increasing number of school districts are defying those states’ laws that ban mask mandates in schools.   Here’s what is already happening as children are back to school full time.

And some schools have already had to go remote due to Covid.  Children are being hospitalized at higher rates as the Delta variant is ravaging the country and world.  The very people who are supposed to protect them are arguing about masks being mandated and are even getting violent over it.

As of this writing, children are not yet eligible for the vaccine if they are under twelve years of age in the United States, and yet, after over a year and a half of this pandemic, people refuse to accept the fact that this pandemic is dangerous and deadly.  Some people may get lucky and have a mild case, but not everyone is that lucky.  Look at the hospitals and talk to the healthcare workers.

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It turns out that children are more accepting of  wearing masks than adults.  The adults are, sadly, teaching aggression and selfishness by fighting (sometimes literally) over masks, vaccines, and other mitigations to try to stop the virus.  This is the wrong direction for all of us.  We need to stop politicizing the health crisis and come together.  Our children need to see us caring enough about our fellow man that we wear masks and get vaccinated if possible.  Otherwise, this world will never be healed.  

People talk about selfishness all the time, especially when it comes to raising children and not wanting the children  to become “selfish little brats.”  However, the parents who are arguing about wearing masks as well as getting vaccinated and protesting against mask/vaccine mandates are teaching the children how to throw a “fit” and be “defiant” to get their own way.  These parents, ironically, tend to be pro-spankers.  It is so sad that their children are getting spanked/hit for similar behavior that goes against the parents’ wishes.  This makes no sense.  We have to model appropriate behavior for children.  They are mimicking us!

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Another thing is that as soon as infants are able to get into dangerous situations, we teach them about danger.  An infant doesn’t know that an electrical socket is dangerous, but we tell him/her it is and move him/her away from the outlet.  Young children can’t see the danger of running out in the street until we panic and scoop them up out of the street while saying, “DANGEROUS!”  There are so many dangerous things from which we have to protect children.  They must take our word for it or suffer possible horrific consequences.  It is just the same for Covid.  Just because we can’t SEE the virus floating around in the air, does not mean it’s not dangerous!

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We need to step up and do what is right for the whole world instead of the individual.  We must protect our children and everyone else by looking beyond our own wants to the needs of our society.  Let the children breathe.

 

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Disappointment, Competition, And Community. The Value In Learning About All Three.

Stephanie G. Cox, M.S.Ed

Being an author, artist, athlete, or any other professional in which one is forced to compete is not an easy thing. As an author, I continue to have to deal with rejection and disappointment.  And sometimes, as a part of business, I must reject and disappoint others.

Writing books and finding an illustrator for my children’s book about my life with Cerebral Palsy has turned out to be much more difficult than I thought.  I hope to be able to contractually secure an illustrator for my children’s book this summer and still have it published in the fall, but nothing is guaranteed.  I may be disappointed again and/or have to disappoint someone else if the samples of illustrations don’t fit my vision of my children’s book.

Since this is a children’s book about me, it’s an absolute requirement that the cartoon character depicting me both as a child and adult is accurate.  I want young children to see what severe cerebral palsy looks like while showing them how much one can accomplish despite the disability.  I also want other children with cerebral palsy to be able to relate to the book.

Processed with MOLDIV

All of this got me thinking about disappointment, competition, and community.  I am 36 years old and I still don’t handle disappointment as well as I would like, yet we expect young children to deal with it better than we do. When they have a meltdown due to disappointment, we punish them instead of helping them learn to cope with disappointment.

And, at times, we even set the children up for disappointment by expecting them to do things that they are not ready to do like compete at a young age or go to a candy store without getting any candy when we know they can’t control their impulses.

Children are put in sports or other competitions and are expected to compete.  Even going to school has become a competition to see who can get the best grades and who can be the most popular.

While there’s a movement to give everyone trophies in competitions, I’m not sure if that’s the answer either.  I absolutely hate the way many conservatives talk about this; that giving everyone a trophy is turning them into “snowflakes (too sensitive).”  Yet, this culture and life requires hard work and earning things through hard work and talent.

Plus, children should be able to enjoy the journey towards their goals and accomplishments.  It is often the journey—whether or not it results in success or failure—that teaches us all important lessons.  We should not take this away from children by making everyone a “winner” or trying to shield them from all rejection and disappointment.

I love this meme from Calm:

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I believe that learning to work hard and how to cope with disappointment is very important for children. I also think for young children, there’s nothing wrong with getting a certificate of participation for participating in an event.  Teaching children that while everyone may not be able to be the best and win, it’s still important to be inclusive.

Then there’s community. Community is very important to teach children.  Having a communal attitude can go along way in helping this society to be more united. Children must be taught that, in basic human terms, everyone is equal no matter what!  Celebrating individual talents is fine but that doesn’t mean anyone’s “better” than the other when it comes to simply being a human being.

In many other countries, the culture is alll about community and putting others first. Children learn this from a young age and have been known to run together to reach a prize and then share it.  The children don’t believe that one can be happy if the whole group isn’t happy.  This is another great argument that children are not born sinful!  They act how they live. We are their teachers.

I recently attended an event with my husband and friend which was very community oriented. Everyone was happy, loving, and peaceful. It was very refreshing that there was no judgment or anything negative. We did play a game but it was all in fun and we were happy for the people who won.

I guess there’s a time for disappointment, competition, and community. However, we must teach children how to cope with disappointment and not push competition on them. Playing should be fun while teaching children about teamwork which is community. Disappointment is a part of life. We must teach them how to deal with their big feelings in a kind, compassionate way.

I must also point out that the Church is failing in community because the Church tends to pick and choose who they allow to be a part of the Church. The Church has been known to reject, be oppressive, and even abuse weaker groups of people of all ages.  Yet, Jesus calls us to love, help, and include everyone in the community.

But most of all, may we teach children community and inclusion. That looking out for everyone is what truly matters.  Working hard together and understanding that everyone has different talents is more important than anything else.

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