I have been meaning to write a post for a while now about everything that is happening in this country and world.
I am beyond angry and disgusted that this current regime has been allowed to seize power over our country. I have witnessed the increasing amount of hate being spewed in every direction. This is tragic for our children, who are witnessing everything. They are learning that hate is acceptable, which is not the case.
Now the children face a very uncertain future. The reality is that COVID is negatively impacting their lives and the people who care for them. They also face the reality that they may not be able to have the vaccines that they need to live a long, healthy life. Their education is at risk. Even their food security is more uncertain than it’s ever been in recent history.
This is especially true for those with disabilities as the laws that help these children and adults be able to get their education are being destroyed. The minority groups that already struggle with poverty and equal access to education and services are now going to suffer because of the bill that was passed in order to take away funding for critical services such as healthcare, food stamps, Social Security are being cut in an unprecedented way.
I’m so sad for our children and the children and families around the world that are being affected by wars and now cuts to foreign aid programs that provide food, medicine, medical care, and other assistance.
The rich want what they want. They want the poor and middle class gone. They want babies to be born but not given the opportunity to live great lives.
The saddest part is that conservative Christians are celebrating this. They are celebrating the fact that transgender children are not receiving the education care they deserve and need. They are celebrating the fact that anti-vaccine individuals are attempting to rewrite research on vaccines that have been extensively researched and proven safe and effective. They are celebrating the fact that the most vulnerable are having their critical care taken away by wealthy and narcissistic individuals.
I hear fireworks going off and I feel so sad and angry. We’re literally losing our democracy and people are celebrating.
Jesus said to “A new command I give you: Love one another. As I have loved you, so you must love one another” (John 13:34, NIV).
There’s no love in taking away from the needy and the vulnerable. There’s no love in spewing hate!
This is why I no longer identify as a “Christian.”
It’s only in the true service to others that we can achieve Heaven on Earth. No agenda. No need for any evangelizing or trying to “save” people. Just standing side by side with people who need help.
I’m afraid of a world where children are growing up in the hatred that has consumed the country; especially when it comes from “Christians.”
Teach children love even in these tough times. Help each other as much as possible. Resist the culture of hate and fear that makes the current regime and its followers feel so powerful. In the end, they won’t win if each of us do our part in helping each other and resisting the current regime.
In all of these pictures I have a smile on my face. It was a beautiful day on July first after many days of extreme heat which returned the next day. I hate July! I actually always have because, due my severe cerebral palsy, I am extremely sensitive to loud noises. They make me jump whether I am aware that they are coming or not. Even if I know they are coming, I still get very anxious when trying to prepare for them. I used to get in trouble for not being able to handle fireworks as a child. Thanks to the calming benefit of cannabis, I am now able to enjoy them more.
Nowadays there’s another reason why I hate July. We lost the sweetest baby boy kitty during the first week of July. This year marks 7 years since he crossed the rainbow bridge. His birthday is on the 4th. This year we don’t have his “sister,” Patches, who always made it a wee bit easier. I woke up hysterically crying this morning because the three kitties who had given me unconditional love are in Heaven. Sara, my childhood kitty, is the third kitty.
What does all of this have to do with July and Disability Pride Month? A lot considering the way I, as a person with a disability, have been treated my whole life. The Americans with Disability Act was finally passed in July of 1990. I was eight going on nine-years-old when it was passed. I had to go across town to a school that was wheelchair accessible and had a Special Ed program. Not every school was accessible or had a Special Education program to care for the disabled. There was a school just blocks from my house but it wasn’t accessible to me.
I have had to overcome so many obstacles in my life due to society having stereotypes about the disabled. In fact, before the 1980s, people would complain about people with disabilities being in public spaces because “they were disturbing the other people.” For me it was people staring at me as well as the people who said that I wouldn’t amount to anything. I had to prove myself to them over and over due to their perception of me.
While the Americans with Disabilities Act is meant to protect people with disabilities from discrimination and make sure that public places are accessible for everyone, the reality is that it is only the minimum that is required to make society accessible to those who are disabled.
Enter Covid over four years ago. Did you know that six out of ten people with disabilities died of Covid in the height of the pandemic? Some people with disabilities were placed in Hospice care for Covid because the medical community was overwhelmed with the sheer volume of patients and the fact that the disabled are more work for them to give care, as well as the belief that their/our lives are not as “rich” as typical people.
This is tragic. Now we have a society where people with disabilities are being left behind due to the misinformation that Covid is no longer a major threat. Society will not allow the disabled to be a part of it because we need masking and prevention measures. Our population is still one of the hardest hit by Covid even though we are seen on television acting like we have moved on. Some have and that’s causing complications for those who are not able to risk getting Covid.
So yes, I have a smile on my face in these pictures, but my heart is broken over the loss of dear loved ones that accepted and loved me no matter what. And the reality is that society truly has zero empathy and value for my life and others like me. If it did, I wouldn’t have to be isolated from it similar to those people preceding the Americans with Disabilities Act.
Inclusivity means being willing to do whatever it takes to make sure everyone is able to participate. Even if it means a little sacrifice for this to happen. In every public place, there are people who would like to be there but aren’t because it’s literally life and death. Even with all the shots. I can’t swallow Paxlovid and it’s not supposed to be crushed or broken. I would have to go to the hospital and hopefully get the IV antiviral medication. I would probably be sick enough to require hospitalization because I always get bronchitis when I get the flu.
I end this with an update on my children’s book. I was going to release it in March for Cerebral Palsy Awareness Month but our cat, Patches, got sick in February and I didn’t yet have a good way to try to protect myself and my husband from Covid. A woman in our Covid support group recommended that I try a “Readimask.” She once babysat for a child with cerebral palsy and understood about the associated spasms, movements, and different mouth movements when talking. The Readimask is a N95-rated mask that utilizes an adhesive rather than straps to snugly fit to one’s face. It’s the only mask that’s stayed on my face. Despite being able to mask, I still have to be extremely careful with what we do. Masks work well. They work even better when others are also wearing them.
With the fact that Patches crossed the rainbow bridge on March 28th after a short but horrific battle with what we now believe was a brain tumor that was affecting her jaw, combined with the stigma and unwillingness of people masking, and my emotional health being at an all-time low, I am hoping to try to release it in March of 2025. I am terrified that Donald Trump will be re-elected, thereby continuing the divisive hatred and intolerance he intensified throughout his first term as President. There is so much to my life and that, without the help and support from the community, people with disabilities such as myself, and other minorities are going to suffer even more.
Also, since the book was written long before Covid, I needed to be true to myself and add a page about what my life is like now. I don’t get to do all the things I used to do. Everything takes even more planning.
This Disability Pride Month I wish for peace, kindness, empathy for others, and accessibility to society.
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.
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.
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!
I believe that the answer to this question is a whole-hearted yes! As I write this blog post, I am sickened by the Supreme Court overturning Roe v. Wade. Just a few years ago I would have celebrated it, but watching the world situation the last few years, and opening up to the other side of abortion has changed my beliefs about this. Plus, Covid has shown me that the very people who are supposed to be pro-life aren’t at all. They won’t do anything to protect themselves and others from this serious virus that is causing harm and death to millions of people around the world daily.
According to this article, somehow the Supreme Court used this case to overturn Roe v. Wade. “The court’s decision in Dobbs v. Jackson Women’s Health Organization upheld a law from Mississippi that bans abortion after 15 weeks of pregnancy, roughly two months earlier than what has been allowed under Supreme Court precedent dating back to Roe.
In siding with Mississippi, the court’s conservative majority said the Roe decision was egregiously wrong in recognizing a constitutional right to an abortion, an error the court perpetuated in the decades since.”
To be honest, I truly don’t understand how they went from an appropriate limit on abortion to completely overturning the whole law. I personally believe in limiting the abortion to 12 weeks gestation unless it’s a medical emergency.
I hate abortion! However, watching how the world is so inconsiderate of other people, and how a former president who is horribly narcissistic even tried to overthrow the election, I see now that the “pro-life movement” is truly just pro-birth. They don’t want to do anything to help women, men, and babies.
Here are some of my own definitions regarding abortion and pro-life. Again, these are based off my own observations and opinions.
Pro-birth
Pro-birth: Just getting the baby born without doing much to support families and teenagers during and after the pregnancy. Going through the states on this website, it seems like the states that are outright banning abortion only allow it for a medical reason. And some of them are trying to do away with the Plan B pill.
“What does Plan B exactly do?
Plan B One-Step is a type of morning-after pill that can be used after unprotected sex to prevent pregnancy. Plan B One-Step contains the hormone levonorgestrel — a progestin — which can prevent ovulation, block fertilization or keep a fertilized egg from implanting in the uterus.
Some states are limiting access to emergency contraceptives such as Plan B because they equate it with the abortion pill, but this isn’t the abortion pill, and it’s outright dangerous for rape/incest victims, people who don’t have the ability to care for the baby for any reason, and people with disabilities who are seven times more likely to be raped and/or sexually assaulted! They are not capable of handling pregnancy and the emotional trauma of having the baby taken away is tremendous.
Thankfully, in the midst of getting this post edited, President Biden signed an executive order to protect emergency contraceptives, abortions that are to save the life of the person who is pregnant if the child can’t also be saved, and beef up the Obamacare mandates of providing contraceptives. See this article as well as this one for more info about these protections.
I also worry about forced sterilization for people with disabilities and other people who are “different” because some of these pro-birth people are also White Supremacists that might try to limit who should be allowed to have children.
Pro-life
Pro-life aims to protect the life from conception to natural death. It recognizes that there are times when abortion is necessary for the woman who has a medical issue, the baby is dying, rape, incest, and people who are unable to carry the baby. It’s being willing to choose as much life as possible without having to deny that the baby is a baby.
Pro-life: Being willing to help stop an abortion through providing free support, birth control, health care, family health care, family leave longer than 6 weeks, free lactation consultants, help for child care, high quality child care, more sick days, access to healthy food for the entire family, classes on child care, and mental health care.
Some of these people call themselves pro-choice. I don’t have a problem with that as long as they truly believe in giving people the information they need to make the appropriate decision for the women and family. Many of these people want limitations on abortion and don’t believe it should be done after the first trimester unless it’s a medical emergency and the doctors try to save both the woman and the baby.
Abortion is a hard word because sometimes the baby is so wanted but he/she is found to have a condition that is slowly killing him/her and hurting him/her. In these cases, if these babies are viable, they simply have the woman deliver the child and hold the baby as he/she naturally passes away. This should never be prohibited! Unfortunately, this type of humane treatment is also called “abortion.”
On the opposite side, to abort a baby just because he/she has a certain condition that is livable is totally wrong! We deserve to live.
Pro-abortion
Pro-abortion: Not always wanting limitations on abortion. Not always wanting to make sure that the people are informed about what they are about to do. Also, some of these people are fine with partial birth abortion. Partial birth abortion is sick and murder!! There’s absolutely no reason to have a partial birth abortion. No!
I’m pro-life. I want children to live in a world that protects them long after birth. I’m sorry that there are times abortion is necessary, but it is. I would love to see it become more humane and respectful if the baby is removed from the womb closer to the 12-week-mark of pregnancy.
I’m very concerned about a number of topics that I have already covered. I think that this is a horrible precedent to set. And the fact that these judges lied under oath in order to get a position on the Supreme Court is a travesty!! So does that mean judges are free to lie under oath without any consequences? What does this mean for the justice system? It is already messed up with racism and other corruption, so now it may become even more corrupt.
Along with the majority of Americans, I am worried about the rights of the LBGTQ community that is already under fire. Please see my previous blog post about this. I’m worried about the rights of Black people, various other minority groups, disability rights, and the falling of our nation because of people who are narcissistic, right-wing extremists that want to stop progress and go backwards.
Yes, this is a truly scary time for the country!
Talking to young children about this
Finally, I would like to share a few tips for talking to young children about this.
Explain to the children that a woman has the ability to grow and deliver a baby. It is a wonderful thing!
However, sometimes the woman can’t keep growing the baby and that is sad.
When a woman is unable to grow the baby, the baby is removed from her body by a doctor and it’s traumatic, but necessary for her well-being.
The baby goes to Heaven (or the version that is appropriate for whatever spiritual beliefs that the family has).
The government is trying to take this away which will really hurt women and their families.
We want to protect this and protect babies from suffering.
This is a very complicated subject and emotional. I wish people could come together and set appropriate limits on abortion and prevent unwanted pregnancy from happening. Reversing Roe v. Wade isn’t a win for anyone. More will die because of this and that is NOT pro-life!!!!
With the current laws being enacted in Florida and Texas as well as other conservative states to stop the LBGTQ+ community from being able to live their lives, it got me thinking about how I used to believe some of the same things until I started really listening to these people. I have many friends in this community now and I am heartbroken over how they are treated.
Many LBGTQ+ children are kicked out of the house when they come out to their parents. Some are subjected to horrible “conversion therapy” to try to “convince” them that they are not gay or transgender. These children are very likely to be abused and murdered by their family or people in the community who don’t want to understand that they are people too.
“Lesbian, gay, bisexual, transgender and questioning (LGBTQ) young people are over-represented in foster care, where they are more likely to experience discrimination, abuse, neglect and the risk of harm. A 2019 study found 30.4 percent of youth in foster care identify as LGBTQ and 5 percent as transgender, compared to 11.2 percent and 1.17 percent of youth not in foster care.”
In Texas, a law was recently passed making it “child abuse” for parents to give their transgendered children care that would allow them to have the body that their brain is telling them they are. As of now, a judge has partially blocked the law. I believe that the exact opposite is true. It is abusive NOT to allow these children to have the gender affirming medical care they require. They are at a high risk of suicide for not being allowed to have transitional gender affirming medical care and psychotherapy.
People like to shrug off the suicide issue of transgender children, but according to Forbes from 2021, “52% of all transgender and nonbinary young people in the U.S. seriously contemplated killing themselves in 2020. More than half thought it would be better to be dead, rather than trying to live with rejection, isolation, loneliness, bullying and being targeted by politicians and activists pushing anti-trans legislation.”
These children have to deal with so much discrimination from conservative policymakers. They are banned from using the correct bathrooms with which they identify. What do we think happens when a trans girl is forced to use the boys’ bathroom and vice versa? They look like the gender with which they identify.
And banning them from playing on the team of the gender with which they identify because people think they have an advantage over the other team is wrong. We might as well ban anyone “different” from playing sports because I can guarantee that transgender children don’t have any advantage over their peers. Everyone is talented in different ways!
Finally, the so-called “Don’t Say Gay” law in Florida enacted by Governor DeSantis is horrible! As an early childhood professional, sex and gender identity isn’t a main topic in the curriculum unless we have a child with gay parents or a child who is struggling with this issue. These children deserve support and compassion. Teachers need to teach children to accept these differences. The LBGTQ+ community is in no way trying to get children to be something that they’re not. They are just trying to get acceptance and support to stop the horrible discrimination they face daily. I believe in having developmentally appropriate discussions and books that include the LBGTQ+ community in the classroom.
I am so grateful that President Biden is taking action to try to help protect everyone in the LBGTQ+ community by taking executive action to stop the use of conversion therapy and help keep the rights and lives of this group as safe as possible. The amount of bigotry from the religious, right wing is absolutely disgusting! And it’s only getting worse!
There’s another group of children and adults who live with a higher than average risk of being abused: The disabled.
“Child abuse and neglect is reported in 3% to 10% of the population with disabilities. The rate of child abuse and neglect is at least 3 times higher in children with disabilities than in the typically developing population.”
Children with disabilities have higher needs and require more care. They often have unique behavioral issues that typical children don’t. For some children with disabilities, these behaviors may last well into adulthood because their brains aren’t able to mature like typical people. They are so reliant on others for care and help that they are prime candidates for all types of abuse.
As someone with a severe disability, I can attest to the abuse. I was physically, verbally, and emotionally abused by my dad because I couldn’t control my muscles. I was emotionally and verbally abused by other family members and people at school. Just because life with a child who is disabled can be very stressful and frustrating at times doesn’t excuse abuse.
Like LBGTQ+ children, there’s a stigma that comes along with being disabled. We live in an ableist world. For a long time, people with disabilities, starting in young childhood, were locked up in institutions and forgotten. These institutions were absolutely horrible and many children died from abuse and inadequate care. There even used to be laws that prohibited people with disabilities from being in society. Similarly with the LBGTQ+ community, the disabled have a higher risk of being murdered.
As the article above points out, many religious groups believe that disabilities are due to “sin,” thus, causing people to treat them badly and abuse them. Let me be clear: No disability is due to sin!
Another thing that the article on ableism points out is that the medical community often treats the disability as a “problem.” But people with disabilities have absolutely nothing “wrong” with them. They are just different and deserve quality medical care, and yet, they often don’t receive it. The cost of medical care is even higher than that of typical people and people with disabilities also usually require adaptive equipment and therapy to be able to live the best life they can!
Unfortunately the Americans with Disabilities Act hasn’t helped all that much because most public places only do the minimum requirements. Many employers don’t want to have the responsibility of helping people with disabilities work in their work places. And people with disabilities don’t get “free money.” If they are on SSI, they can only have $2,000 if they are single and $3,000 if married. We’re trying to get this changed.
Being told by parents, teachers, employers, and society in general that “You’re worthless, a burden, a problem, a liability, and your life doesn’t matter” leads to isolation, anxiety, depression, and suicide.
Covid has really bought out just how ableist the world is, especially the United States. Many people feel that their lives are more important than others who are still vulnerable to serious consequences of getting Covid. It’s all-too-often just laughed at while believing that it is perfectly fine for people who are high risk to remain locked up for the rest of their lives. This is going back to the days when children and adults were forced to remain locked up and out of society. This is abuse!
There is no excuse for abuse of any child or adult, especially if they are different. We are all equal and worthy no matter our race, gender, sexual orientation, ethnicity, and/or disability. We need to stop going backwards and start moving forward to become a kinder, more accepting world. No child should be hurt. It is also abuse and ableist to expect any child to be someone that he/she isn’t or to expect children to be able to do things that they are not yet able to do!
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.
This has been a major challenge for me in my career. It is also a very sensitive subject for me because I have always wanted a child. May this post show people that people don’t have to be parents to advocate for children and have a career in child and family services.
The post below is from my friend, Elaina; we both had abusive backgrounds as children. That makes us even more passionate about advocating for children.
What is to follow is spot-on for me too. Having been subjected to obvious abuse from my dad and covert abuse from my mother who is now out of my life, I have always wanted to help stop this cycle. I want children of my own, but with my severe cerebral palsy, it just never got to the point of being able to afford help. Believe me, I don’t know what parenting is like, but I know it’s tough to re-parent myself—something I work on constantly.
I have spent a lot of time studying child development (I have a Master’s Degree in Early Childhood Education) and have worked with many children, including many young children. And, being severely physically disabled, I have gained a lot of insight on being totally dependent on others for my every need. I know how it feels to be treated harshly and gently.
I’ve asked my mommy friends if advice from my perspective is helpful, and they tell me that my lens really helps them, both on their good days and on their days in the trenches. They also have shared that they appreciate the things I’ve taken the time to learn and share – kind of like how when going to doctors, we look at their book knowledge and experience, not whether or not they’ve had the ailment. I care deeply about children and I feel strongly about advocating for them. However, I don’t think I am better than anyone else.
Please take to heart Elaina’s reasons for being so passionate about advocating for children despite not having children of her own.
March was Cerebral Palsy (CP) Awareness Month and April was Child Abuse Awareness Month, and I have been wanting to write this post for a while now. This post will cover CP and abuse and mental health issues as May is Mental Health Awareness Month.
Cerebral palsy is a neurological disorder that affects the brain causing difficulty in movement. It can be mild, affect one side of the body, or severe. I have severe cerebral palsy and I can’t physically take care of myself at all. I didn’t breathe for 40 minutes after I was born and they almost gave up on me. I was in the NICU for a couple weeks and I wasn’t expected to live. But I did! I will be 40 in September!
But the lack of oxygen caused the brain damage that led to the CP. I can’t control my muscles and have spasms which are involuntary contractions of the muscles and involuntary movements. I am typical cognitively. I type with my nose and write books and these posts with my nose. My children’s book about my life with CP will hopefully be out at the end of the year. Getting the right illustrators has been hard but I finally found the perfect people to do it and they are doing a wonderful job with it!
Having a severe physical disability is hard but I refuse to let it ruin my life. I am a survivor and I hate pity! I crave acceptance and to be seen as a person! Sadly, many people are not able to see the real me. They see me as a child or subhuman instead of a competent person. I am so much more than my disability.
I prefer person-first language. I am a person with a disability, not a “disabled person.” I am a person with cerebral palsy! I refuse to be defined by my disability. Words like “handicapped,” “cripple,” “retard,” and “spaz” are very offensive to the disability community. We are people who deserve respect and rights and support. But again, despite making progress in this country, some people just refuse to accept and see us.
Children with disabilities are more likely to be abused and bullied. I was. Children that didn’t know me would make fun of me at school. I was also physically, mentally, emotionally, and verbally abused by my parents. As I have written in another blog post, I truly believe that both parents are/were narcissistic which is confusing because they did fight for me for the services that I needed and did care for and loved me, but there was also abuse at home. Some of the abuse that I experienced I recently found out through professional therapy that it was abuse and that I wasn’t protected like I should have been and have been put down even through adulthood. I am now protecting myself from those people and my husband does a wonderful job with helping me.
What is sad is that in a Facebook group my abuse was questioned by some of the parents and these parents claimed that adults with CP are harder on parents. There’s no evidence that this is the case and all the people I know with CP have wonderful relationships with their parents because they weren’t abused by them. Never ever question the abuse of someone!!
Due to the lack of being able to do what typical children and adults are able to do combined with the abuse and trauma I have suffered, I battle anxiety, CPTSD, PTSD, and depression every day. Sometimes I have it pretty together and other times it is a struggle. The pandemic has heightened everything and I am struggling to get out of it again. I will though. Therapy is helping me.
Having CP is just something I live with like my mental health issues. I try to use my pain to help people. If I can stop one child from being hit or otherwise abused, I will keep advocating and educating people who are willing to learn. My pain and abuse doesn’t define me either but it is something that I live with.
I wish there was more acceptance for people with disabilities and mental health issues. I also wish that people understood that how we treat children will affect their mental health. If one isn’t a white, rich man, it’s still hard to get along in this society and this must change. There should be no stigma for the abused, people with disabilities, or people with mental health issues.
Let’s raise our children to be more aware and accepting. I hope my children’s book that will hopefully be out by the end of the year will help with creating a more zombie accepting world.
Disciplining With Gentle Firmness 