Saddened by this World

I am feeling really emotional right now. I used to be an avid magazine reader and I turn the pages with my nose. I am now trying to get rid of my rather large collection of magazines by looking at them while my is watching college football and making a lot of noise.

I started with Inked Magazine and got rid of a couple after nosing through them. Then my husband asked if I wanted a Y.C. Young Children Magazine aka as “Y.C.” is the journal for the National Association for the Education of Young Children (NAEYC). I have been a member of NAEYC since 2006 or 7 during my junior and senior years of college where I was finally heavily into the early childhood curriculum and doing observations at the Child Development Lab. Later I would do my practicum work as well as my internship there. I even worked there for a year after college before I started my graduate school program in Early Childhood Education.

The issue of Y.C. was from the winter of 2021. It had a little boy in a wheelchair being lowered from a school bus via a wheelchair lift. This was something I did throughout my preschool through high school years. I felt a bit annoyed by the lack of masks since it was during the height of the pandemic, but I just wanted to read it because it was about inclusion in the classroom of all abilities and teaching children without disabilities to see the disabled in a positive light.

With the current situation in our government trying to move the Special Education from the Department of Education to the Department of Health and Human Services makes the enforcement of the Individuals with Disabilities Act (IDEA) harder to enforce and implement than ever before. Not to mention that IDEA is supposed to guarantee that every child with a disability is given a free and appropriate education in the least restrictive environment possible. Instead of being forced to sit in a “special classroom,” children are included in the regular classroom and are provided with the necessary support to be successful. I was one of those children who eventually worked my way into the regular classroom full time by the time I was in the third grade. Everyone benefited from having me in the regular classroom full time.

As I read some of the articles, and saw some recommended children’s books about disability, I thought about how I have written my own children’s book about my life with severe cerebral palsy. It’s real, it’s positive, it’s diverse, and features both non-disabled and disabled children in it. I usually prefer the person-first language because I don’t consider myself to be cerebral palsy only. I am so much more than my disability, but yet, my disability impacts every single aspect of my life. It always has and always will.

After so much heartache trying to get my children’s book illustrated and so much money, I thought I could work with a certain local marketing guy and I tried to do so. Unfortunately, we are living in strange, difficult times especially if you are competent in a certain vascular virus running rampant. If that’s not enough, the country in which we now find ourselves in the United States has gone backwards in so many different ways. Now my book is just sitting here waiting for me to publish it. I wanted it published before the pandemic. I never thought I’d be in this position of having a lot of major obstacles that I can’t control.

I’m looking for a marketing agent that would understand my situation. I can’t do this alone. Not anymore at least. When my last book was out, which is no longer in print due to the evil publisher being corrupt, I felt like I had to jump up and down to get noticed. Then I got hate from Christians who believe that God wants children to be spanked/hit. I did extensive research on the subject and found that the few verses that implied the use of corporal punishment on children actually meant the opposite. Discipline and guidance are what they truly mean. Plus, all corporal punishment is harmful to children even if they grow up to deny it and seem fine…Sounds familiar to the vascular virus running around, doesn’t it? Thousands upon thousands of peer reviewed research shows that corporal punishment especially “loving” spankings are very harmful to the developing brain and social-emotional development of children. Years of research. Yet, some people still insist that they have to inflict pain upon their children from young ages to make them grow up to be great people. Just like people do when confronted with the years of research regarding the harm done to the body by the vascular virus, especially when people are repeatedly infected with it.

So I sit here lost in the world and missing being the early childhood professional that I used to be. I miss interacting with the precious children. And I desperately want to help the disabled and non-disabled communities to learn about disability and inclusion especially with all the exclusion happening for six years as well as the government ruining the inclusion of children with disabilities. Not to mention that the government has weakened the Olmsted Law that says that people with disabilities should be able to live in their homes and communities instead of being institutionalized. Institutions are and always have been horrible places for the disabled. We’re not patients. We are human beings with different abilities. We deserve to be in society and in our own homes with the appropriate support.

I hope something will happen to help me help others as well as change society somehow. Right now, I feel like crying and I probably will.

Children are our future and if we don’t protect them and teach them kindness, we have no hope for the future.

Disability Pride, Inclusion, and Grief

Celebrating July being Disability Pride Month.

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.

 Unfortunately, wearing a mask can get one bullied or even assaulted. People are stigmatizing masks which further stigmatizes the disabled, elderly, and other minorities.

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.