Disability

DEAR GOD (01/05/2025)

OUR BEAUTIFUL CHALLENGES

Dear GOD,

Today is the first Sunday of the new year. Last year, I tried to write to you every Sunday to form a relationship with you. Growing up, my parents brought my siblings and me to church. As we got older, they sat down and told us we were old enough to make our choices about religion and you. As my siblings and I got older, we had our feelings about you and religion. I always felt myself questioning if you were real or not because of my disability.

For me, it has always been a struggle to believe in you. As a person with a disability it is as if people with disability gravitate towards you to look for answers on why they have a disability and how you can help them to get better or take the pain away. I just never thought way. I thought if you did exist and if you did have a helping hand in making me and have a helping hand with my complicated birth. There was a reason that you gave me a disability; I may never know why, and life is too important to me to spend my days searching for a reason why I have a disability. Then there are people with disabilities that they feel like they should be devoted to you for some reason. 

I’m not going to devote my life to someone I’m not sure is 100% real or that if you had a hand in giving me a disability, then why should I devote my life to so much inflicted pain and challenges? How should I trust anyone who does that to them? It doesn’t mean I’m not curious about you. I will always be interested, but to trust you, I’m not sure if I’ll ever get there. It doesn’t mean I don’t want some kind of relationship with you.

However, I’m a big believer in faith. I believe there is someone up there watching over me. I don’t think you can’t watch over everyone. I think you send angels to people to watch over them. Then, if we genuinely need help, you step in. I also believe that I should do most of the work. You or my angel will help me if I need a little courage.

These are some of my questions, so I want to start a series called “Coffee with God.” If I post something like this to my blog, I am just asking for negative thoughts and opinions from people who only have one way of thinking on this subject. It’s not that I’m looking in the light, as people would say, but I am looking for some understanding. Not all people with disabilities are believers in you. Not all people with disabilities feel that they dedicate their lives to you. 

I have always had a love/hate relationship because I’m unsure what to think. Returning to how my parents left it up to us to decide, I think they did the right thing. I have seen so many of my friends who have grown up with you present in their lives, and now they are either so narrow-minded one way or the other.

If I ever married and had children, I would do what my parents did: give them the foundation and then let them decide. I never got married and never had children because I thought my disability was essential to take care of; that’s a whole other story that I will on my blog when I’m ready.

While I have been curious about you and have always thought that at some point in life, I would return to trying to get to know you, I had to get to know myself first. 

Life can be funny at times because my partner is a religious person. This made me curious about you again. I have been going to church with him on Sundays. It is easy because of the pandemic; church servers can now be live on Steam. Not having to walk into a church makes it easier for me because one of the things about walking into a church is that it feels awkward.

Whether you are close to God or not, what would you say to him if you sat down with God….?

Thank You,

Marie

Disability

NEW YEAR SAME ME

OUR BEAUTIFUL CHALLENGES

It’s a new year, and I’m making annual affirmations for myself. Everyone should re-evaluate once a year. The idea came from my coffee club, which I attend twice a month on Zoom. The group talked about resolutions they didn’t complete last year, and I liked the idea that we still had the opportunity to carry out those resolutions in the new year. We don’t have to give up. There are some things I just need to try again, and some things I need to keep reminding myself. We all have them. 

One of the things I’d like to keep trying is maintaining my daily affirmations. Whether I write them down or just think of them in the shower or during a walk, they’re important reminders that I matter. Here are just a few that work for me and may also help jump-start your own list:

  • I’m enough for myself
  • I believe in myself because I have overcome many obstacles and challenges. I’m proud of this
  • I am worthy of life and love
  • I have enough confidence to refuse to give up on anything
  • I’m brave 
  • I love who I have become 
  • I struggle, but I don’t let my struggles get the best of me 
  • I have learned to be enough for myself, in part by accepting my challenges
  • I know those challenges don’t make me better or worse; they are just a part of me
  • It has taken me years to learn that I believe in myself and realize Disability is just a word, not who we are 
  • I’m an independent person
  • I’m good enough for the people who give me a try, whether it’s family or an acquaintance

These words replay to remind me that I’m just like everyone else. It has taken me a long time to see that just because I have a disability, I’m not less of a person. It can be hard to stay positive, keep yourself focused, and find your worth when you have a disability. 

Many times in life, I lost track of myself temporarily because I didn’t feel like life gave me a fair purpose. For a time, I thought people only saw my disability. Over my lifetime, some people stood behind me and supported me. On the other side, some people weren’t so optimistic about what a young child or young adult should do when she has a disability. Educators told me I was taking up space in their class and for other kids who can learn. They didn’t think I deserved the same education, but if they got to know me, they’d see I had as much potential as my classmates.

So, how did I start to focus myself? First, I had to get those naysayers out of my head and tell myself they would win if I defined myself by their false impression of me. This just gave me my purpose. Whenever someone was a naysayer to me, I gave everything I had to prove them wrong. 

Then, when those people came back around to see that I overcame my obstacles, which they didn’t expect of me, they felt like fools. My purpose has constantly been proving people wrong, but when it came to proving myself wrong, that was a whole different ballpark.

I didn’t know how to tell myself that I was good enough. So, having these affirmations in my head replaces the naysayers. Rather than the snap judgements of others that used to play on a loop in my head, I repeat what I know of myself, which is positive.

If you are like I was, I invite you to practice affirmations of all the positive things in your life. Play them on repeat in your mind. It’s okay, don’t be shy. We all have things to work on and remind ourselves. You don’t have to say them out loud, they can just be for you. After all, we live in our own minds and we deserve for that to be a healthy space.

Disability

ACCEPTED

OUR BEAUTIFUL CHALLENGES

 “Cerebral palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood—cerebral means related to the brain. Palsy means weakness or problems with using the muscles”.  -UNKNOWN

Note: As I write about acceptance, I think about both the ones who have accepted me and those naysayers who have told me that I would not amount to anything because I’m only a disability. It can be so easy to believe in the naysayer rather than the cheerleaders on your side. Those negative people stay in your head, which we feed into. (When it should be the ones who cheer you on that stay in your head!) However, we are human and often dwell on negativity rather than positivity. I want to be able to tell my story in a positive light. Still, I won’t say people who live with a disability aren’t always positive, but it’s also not always negative. Disability or not, you, the person, have to choose how you will accept life.

At times, I didn’t know how to accept myself. Accepting who you are will be easier to share on the outside, but consistently believing in yourself on the inside can take your whole life; it’s a process that needs attention daily. This entry started as something else, but it didn’t sound like the story of acceptance when I reread it. It sounded like me whining about my life. I don’t want the story of my life to sound like that because that is not who I am and what I want to be known for. I’d like my life story to be about how I chose to look at my challenges, how I decided to see myself without a disability, and how life made me see myself with a disability. Having a disability makes you look at life differently. 

The story of accepting who I am should have begun from the day I took my first breath. To the outside, it was, but to get myself took almost half my life.

I’m one of 17 million people who have cerebral palsy. I have talked to and mentored so many people with cerebral palsy around the world. I have read many books and blogs about the cerebral palsy community. I have been to multiple talks and conferences about this disability. I have even been the guiding force behind discussions and seminars about cerebral palsy. I never get tired of sharing my life’s story with cerebral palsy, no matter how often I do it. The more people who know about what I think is one of the most misunderstood disabilities (cerebral palsy), the more the world and people can see that cerebral palsy is much more than the assistive devices we use to make us as independent as possible. It has taken me so long to see that within myself, so how should I expect others to accept who I am if I don’t get who I am? I’ve learned over the years that the key to acceptance starts with yourself. 

My journey of accepting myself started in my mid-30s. My body was being invaded by an autoimmune disorder (Psoriatic arthritis). Psoriatic arthritis is (Psoriatic arthritis – Symptoms & causes – Mayo Clinic.) As anyone with PsA knows, it is an excruciating disorder when you add it on top of cerebral palsy, which, at times, can be very painful. My life was in chaos for a few years. I have published two essays on  The Mighty: 1) What It Is Like Having Both Cerebral Palsy and Psoriatic Arthritis and 2)What It Is Like To Have Psoriatic Arthritis.) These few years were some of the most painful and frustrating ones since I already despised myself because of my cerebral palsy.

I remember lying in bed one night, thinking I was at my lowest point. I felt like I was at a crossroads. I already hated having cerebral palsy, and I always have PsA, so what do I do now? I thought that I needed to accept one of these two disabilities or both. I chose to accept cerebral palsy because I, at some point, believed that the PsA would go away, but the cerebral palsy would always be there. 

I found an online United Cerebral Palsy (UCP) program for adults with cerebral palsy. From that point, my journey to accept who I was began.

Over the last ten years, between UCP and social media, the journey to understand who I am as a person with a disability has had its highs and lows. The disability community is incredible as a whole. However, when I entered the cerebral palsy community on social media, I felt more judged than in the able-body community, and I still do. It’s a community where I think they aren’t heard when they speak their mind. I also think just because they have cerebral palsy, they feel like they know everything about the disability. If you realize anything about cerebral palsy, you understand that there are different types of the condition/disability. So, having cerebral palsy doesn’t mean you mirror another person. While we all have the base of whatever type of cerebral palsy we have, people bring their uniqueness to their cerebral palsy; this is one way that I feel the cerebral palsy community can be judgemental. The other way I feel like the community can be judgemental is that many appear to believe that they are better than each other. No wonder why I feel like the community doesn’t get respect. Part of me thinks that the community doesn’t deserve respect. Still, I end up with myself and the other people in the community who understand that just because you have cerebral palsy doesn’t mean you have been a know-it-all or judgmental to others in the community. I have been doing this for many years.

I was judging not only the cerebral palsy community but also the disability community. I didn’t want to be associated with either community for many years, not that I thought that was better than them. I felt if I were near someone with a different cerebral palsy from mine, I would catch their cerebral palsy. As for not wanting to be a part of the disability, I didn’t think the word disability suited me. I thought disability didn’t decide who I was. I wasn’t sure what word would suit me, but it wasn’t “disability.” For me, I saw the phrase disability as being for those people who were in a wheelchair, which made people feel sorry for them, who saw the world in a negative light because of their challenges. The way they saw life wasn’t the way I saw life. I saw life as a challenge, but I overcame most of those challenges, and that was who I was. Looking back on my life, I know that I was accomplishing something and that those people were just being negative about my disability.

As years passed, my fear of those two words (disability and cerebral palsy) got worse, and then it turned to total denial of being labeled with either word at one time; I won the Yes, I Can award (more about the Yes, I Can award later.)

During my journey of accepting myself, many times along the way, I realized  I still wasn’t accepting myself. It was still up to me, but I was just shocked when I went on social media to read how others with cerebral palsy were living life to the fullest. Yes, I was living my life to the fullest my way, but still, the way others lived with cerebral palsy was just something that I was scared of within myself. I thought about things, but that were people living what I was dreaming of, and I was just living within myself, dreaming about life. 

I feel like there is an unspoken part about this disability that one takes seriously and it’s about the mental health aspect! When it comes to doctors, they only focus on the physical side of cerebral palsy, which is what they need to do because it’s a physical disability. Living with cerebral palsy, I can say most of my mental health issues stem from cerebral palsy. It’s not that we are born with mental health issues because of cerebral palsy; that’s not what I’m saying. It’s well-documented that the community has a high risk of depression, but yet the medical community doesn’t address this area of the community.  

 The cerebral palsy community has a high risk of depression for many reasons. Cerebral palsy is a visible disability to everyone. The sad thing is that the world judges by first appearance, so when you see someone with a physical disability, remember that people judge on what they see at first appearance. I suggest not trying to because you wouldn’t want them judged at first sight if it were a loved one!

For many years, judging on my first appearance was what I was all about, but, at the same time, I didn’t want to be judged on my first appearance. In the end, I was doing the double standard because I wished to change, meaning I didn’t want to accept anyone with a disability, but I wanted people to accept me. 

About four months after I started to put myself out there on social media, I met a guy who not only had cereal palsy but was also deaf from cerebral palsy. (As a Couple With Disabilities, Our Relationship Has No Blueprints (themighty.com).) I never wanted to be with anyone with a disability, but when I met him, I was in AWE because of his story, and we ended up dating for about four years. In our four years together, he taught me much about life, disability, and love. We aren’t together anymore because of distance, Covid-19, and the challenges of our disabilities. It was a challenge at first. I wanted to join a friendship, and he was just not ready to let go. It took a while, but it turned out that we were better as friends. 

During COVID-19, my next stage of learning to accept myself was when I became independent. I moved out on my own at this time. It was during COVID-19 that I faced new challenges that I never expected to have when moving out, but I had no choice but to be trapped in my new apartment.

Other than sitting in my new apartment thinking this wasn’t what my life had come to, I started writing about everything I did and thought about my life with a disability. By doing this, I began to heal and accept who I was and a life with a disability. Writing gave me peace and made me see my disability is not my weakest point at all; it’s my strength- A strength that I might not otherwise have if I didn’t have cerebral palsy.

 It has taken me a long time to accept myself, and I’m still not done because life is constantly changing. Who I am is always who I am, but if I want to be taken seriously in the world and not just looked at as a disability, I have to accept myself. I have learned so much from this self-acceptance journey! It made my life less challenging. I know I will always have challenges; that’s just life. Still, I see now no matter what disability you have or what challenges you have in life, if you resist those challenges, that brings more challenges to an already challenging life.

Disability

THE FRUSTRAD BODY

OUR BEAUTIFUL CHALLENGES

I have been figuring out a way to write about this. What I call “the frustrated body” is hard to explain if you don’t live in one. Okay, everyone has a frustrating body at some point, though. Even a person without a disability could be accident-prone, have aches and pains, or find they can’t do everything they want. My mom had a stroke about 16 years ago, and while she was recovering, she would ask me how to get dressed. I would tell her it’s automatic; I just do it. But she had to relearn, which was frustrating for her. I don’t get frustrated that I can’t drive a car, I just know what I can do and focus on that. 

For people born with cerebral palsy or other neurological disorders, having a frustrating body is part of life. We adapt and see it as our everyday routine. Then, some people might acquire neuro-muscular disorders such as MS, Parkinson’s, stroke, and as a result of a TBI (traumatic brain injury). It wasn’t until I started dating my boyfriend that I began to see how living with a disability from birth is so different than acquiring a disability. He still remembers the able body he was born with, but my body is my version of able because it’s all I know.

When someone has a neurological disorder from birth, such as cerebral palsy, as I have, we don’t mourn for a body we used to have. We’re so busy focusing on how to use the body we do have. 

I observe what it is like for others to have an able body, yet in my eyes, my body is able, just a different kind that none understand unless you know what it’s like to be born with a disability. Even then, each person who has been born disabled carries themselves differently. Some will not let their disability get the best of them, while others feel that because they have a disability, they don’t know or can’t see how to live their life with a disability. So they just don’t try.

Therefore, the level of frustration we feel is different because we have a different baseline.

I chose to go beyond my disability. I know it can be challenging to go beyond your limitations, but I was given a life and want to make the most of it while I have a chance. As I get older, my body will be more taken over by my disability. I’ll experience the same age-related conditions that everyone experiences at my age, like arthritis, osteoporosis, and general aches and pains. I may experience these earlier than most. But with CP, there’s no way to predict how much more my body will be impacted, and it may not respond to the same treatments.

My message to those born with disabilities and to those who acquired one and are still grieving the life they once had is that life is still a gift. A body is better than no body, and you can learn to adapt. To those born with disabilities, you can educate those who acquire disabilities. Show them that they can still enjoy life because you’re also enjoying life. A little perspective is an exercise we can all do… along with the medicine we take.

We can focus our minds on the positive. That’s a choice we have each day. There are lots of options, like meditation, journaling, exercise as much as you can, getting fresh air, and working with what you can do.

Disability

Obligatory New Years Resolution Blog

OUR BEAUTIFUL CHALLENGES

It’s a new year, and everyone is talking about resolutions. I’m no exception. But with CP, the usual resolutions can be life-saving for us all. It isn’t about fitting into a new dress but about maintaining mobility. It isn’t about being more put together but about having the ability to be there for our families and friends. Most of all, it’s about remaining independent.

Below is my list of personal resolutions. 

  • Resolution 1: To be more fit and healthy so I can be fit to walk to the green in the springtime – fruits and vegetables as snacks – more apples, less chips and sugar. Why I picked this one: When I eat healthy, it helps to reduce the stress on my CP, which makes day-to-day life more comfortable. Then I can focus on living my best life.
  • Resolution 2: Use the journals from my boyfriend John – pink for morning, purple for night because we feel differently at the start and end of each day. Why I picked this one: Being able to write down the positive things in my life gives me gratitude. 
  • Resolution 3: Use a meditation app once a day. Why I picked this one: When I use my meditation app, it relieves the stress of the day, so my body can fully relax after a busy day. That means, I don’t have to take so many pain relievers and can enjoy a good sleep at night.
  • Resolution 4: Use the whole world as a gym! Either go to the Y or walk the apartment hallway for 30 minutes. Why I picked this one: Sometimes I don’t have the transportation to get to the gym, but that’s no excuse not to stay on top of my fitness and health. 
  • Resolution 5: Keep a food journal, not just relying on my WW app. Why I picked this one: Writing items by hand takes more time and makes me reflect on my choices for the day.
  • Resolution 6: Finish writing my book by October 6th. Why I picked this one: October 6th is world CP day, and a big part of my book is about spreading awareness that people with CP are just living their lives like anyone else, and they also want to fall in love, make friends, and have hobbies.
  • Resolution 7: Revive my “healthy is independent” philosophy. Why I picked this one: Making an inspirational philosophy will remind me that I have to stay positive throughout the year. I can’t afford to be too down on myself because it’s bad for my health, and I want to be mentally present for the people I love, including myself.
  • Resolution 8: Write an inspirational thought every week. Why I picked this one: Doing this will help me to stay on task that week, and keep an upbeat attitude. 
  • Resolution 9: Finding ways to be more organized. Why I picked this one: This will help me keep track of things, so I can tackle the mountain of papers on my desk. This will also make my boyfriend very happy.
  • Resolution 10: Mindful spending (no frivolous purchases). Why I picked this one: I need to address my impulse purchasing. I live in a small space, so only buying the essentials will help to keep things tidy, and also enable me to save for the future.
  • Resolution 11: Setting aside at least $50 a month for my future. Why I picked this one: Having a healthy rainy day fund means less time worrying about how I’ll afford the laundry or an Uber for emergencies. It also means a nice vacation in the springtime when the weather is best.
  • Resolution 12: Learning how to be more assertive. Why I picked this one: I’ve always been a people-pleaser, and as the boss of three PCAs, I need to act like more of a boss and advocate for myself. I have a lifelong fear of being too demanding, or fitting the stereotype that I must want everything done for me since I have CP.
  • Resolution 13: Read one book a month. Why I picked this one: Reading relaxes me. A healthy mind is a way to educate myself by reading about new people and experiences.
  • Fix my blog
  • Resolution 14: Bringing a packed lunch from home to save money and stay healthy. Why I picked this one: This will not only save money, but also make it easier for me to eat well. 
  • Resolution 15: Believe in myself more. Why I picked this one: There are days where I feel like I’m not a good boss, partner, or friend. With this attitude, it’s hard for me to have a good connection with the people in my life. By believing in myself more, I can maintain healthy relationships even if I’m having a bad day.
  • Resolution 16: Get up earlier (6-7a.m.). Why I picked this one: When I do have to go out early, it gives me more time to get ready. If I’m not rushing, I have a better day overall.
  • Resolution 17: Try something new once a month. Why I picked this one: I want to broaden my horizons and experience as much life as I can.
  • Resolution 18L Tell my boyfriend one thing I like about him every day. Why I picked this one: I want my partner to know I respect him and love him. He does a lot for me, and I love our life together.

When I was born, my parents adopted a dog for my brother because they weren’t sure if I’d ever be able to come home due to my condition. Back in the 70s, very little was known about CP, so it was unclear if I would live a long life or if I could ever be independent. Many people get stressed about the idea of getting older and a new year starting, but for me, each year is a gift and I want to make the most of it. My resolutions are a way for me to remind myself that life is still going on and that I have the chance to try new things and be a better person each day.

I hope that putting this up on my blog will show people that no matter who we are, we all have our own resolutions to be better. I hope you enjoyed this read, and I hope you have a wonderful 2025!

Disability

MONASTERY

OUR BEAUTIFUL CHALLENGES

Dear God,

Good Morning, it’s Josephine. Someone told me that if I don’t trust God, being next to God gives me comfort and peace, and having someone listening to me is all that matters. For about the last year, I have been coming to the monastery and sitting, just trying to get used to talking to you. I feel something, but I’m not sure what.

On Sunday mornings, I go to church and get communion, but I still feel like I don’t belong. However, when I come to sit, I feel comfortable with you. I’m still not sure what kind of relationship with you. I even tried to write letters to you while watching church on Sundays to try to understand you better, but I like that by doing that, I’m forcing a relationship on myself that I’m just not ready to have.

I feel I’m in the moment with you when I’m at the monastery. I can let my guard down and honestly converse with you without judgment. When I’m in a church full of people, I feel as if I’m judge. I feel pressure from the church and people in it because I have a disability, and I feel like people think people with disability turn to God because they think that god will heal them from their disability. That’s not who I am, and I will never be who I am.

You wanted me this way for a reason, and you think I can help myself. However, when I need a little push, you’re right there to help me. Many people need you more than I do, but I know you’re there when I truly need you.

God, it’s not you that I have the issue with; it’s the church itself. Because it’s a building, when I’m in, I feel judged. They ask for money that many people don’t have. I feel pressure when I’m in a church. If I walk into a church, I am looking for comfort and judgment or being asked to give money.

Disability

WHAT TYPE OF PERSON DO YOU IDENTIFY

OUR BEAUTIFUL CHALLENGES

A few years ago, when I was in a dark place and trying to figure out who I was as a person with a disability, the “Me Too” movement suddenly came out. People say, “If you are a woman, you should get behind this movement. I feel I didn’t fit into this new way of life for women. Being a woman is only one part of me. After seeing how “Me Too” changed how women are looked at, I got thinking. I may be a woman, but if I identify as just a woman, I’m just a woman. As much as I need to say I’m a woman. Being a woman is only part of me.

 Having a disability is a part of me, also. When an individual has a disability, we don’t want to be known as a disability. Still, in a way, we have to let people know we have a disability so we can get the modification we need so we be apart can be a part of life.  I will never deny my cerebral palsy.

 Being a woman with cerebral palsy is one of the significant components of my identity. However, there are many other components of me. I like to picture myself on a painting canvas. Years ago, when I was trying to get out of a dark place in life, I stood in front of a full-length mirror for a few minutes a day for a week or so; at this time in my life, I honestly didn’t like who I was. So, being the person I am, I got in my head that if I stood in front of the mirror and saw the physical reflection and stood there long enough, I might be able to see what people saw in me. After a while, it worked, and I could see everything that made me.

What I saw in that mirror wasn’t just a woman and wasn’t just cerebral palsy; it was so much more. What I saw was what people saw in me, what made me: My kindness, my compassion for others. The strength within me is to work past my challenges and so many other things.  At that moment, I started to see what I thought was my weakness was my strength.

When I have a disability, there are times that I can feel that all I see is the disability, as I think that is the only thing people see in me. In many cases, that’s not the case; there can be a handful of people who will only see me as having a disability, but then I see that there are more people who know that I’m more than my disability. It’s just that sometimes, the negativity wins out more than the positive. It’s just that when I hear something negative about myself, it gets in me, and that’s all I hear. When I keep hearing all the negative ideas about my disability, it gets to me, and I end up in a dark place. 

After I saw who I was in the mirror, I saw what people saw me. People see how strong I am and so much more than my disability and being a woman; that is why I call myself a human canvas. Other than being a woman with a disability. I’m also a daughter, a sister, an aunt, a niece, a friend, a girlfriend, a writer, and more. 

No matter how I identify myself or how others identify me, there is one thing we all have in common: no matter what, we recognize that when we all bleed, we all bleed red.

Disability

WHAT AM I AFRAID OF

OUR BEAUTIFUL CHALLENGES

A question like this is tricky. I shouldn’t be afraid because I lived when I shouldn’t have lived. When I was born, so many people didn’t think I would live. However, I’m human, so I am scared of many things. I’m afraid my fear of my disability will take over, and I will quit living. I’m worried that I will gain so much weight and lose my independence. I’m scared of losing people that I care about. I’m afraid after my parents are gone, none will be there to help me with my life. I fear that I’m so scared of not leaving a mark in the world because people just see me as having a disability. Yes, while disability may be part of me, my disability is not who I am. Disability is just a word. Suppose you take the “DIS” out of disability. In that case, you have “ABILITY.” no matter who I am or who you are, we all have our own unique “ABILITY” to live in a world that is made of all different kinds of uniqueness, and the disability community is just one.

For so long, I was afraid of not being an independent person because of my disability. If I wasn’t going to be independent, it wasn’t going to be because of my disability. It would be because of my stubbornness. I never wanted to accept myself as a person with a disability. There was a time in my life when it was a challenge for me to admit that I had a disability. I wanted so badly to forget the disability and be like my other peers. I was okay with my disability growing up, but I never wanted to socialize with others with disabilities. My family, friends, and teachers would always try their hardest to get me to be social with others with disabilities, but I was so stuber I wouldn’t go near or get close to anyone with a disability; it just got worse as I got older. It wasn’t until I had no choice but to push myself out of my comfort zone and grow up that I forced myself to see what it was like to socialize in a community that I belonged to but was too scared or was being discriminated against in a community that was a part of who I was. I was now more afraid of being in the disabled community, and I was ready to run back to the able-bodied community. 

I was afraid of not being accepted into a community that I never received. When I decided to stand up and be part of it, I thought it would be accessible for the cerebral palsy community to accept. The community just accepting me wasn’t the case. Some people welcomed me, but sometimes, I just wanted to return to the able-body community. I didn’t know the purpose of staying in the cerebral palsy community, but over time, I realized what the purpose was: for me to grow. With every new step I took in the cerebral palsy community, I made myself more substantial and more accepting of a community that I was not accepting of.

It’s been nearly ten years since I took my first steps to accept who I am entirely. Life has fallen into place in the last ten years and brought me to where I need to be. By accepting it, I got what I wanted and my independence. I also got over my fear, which was the fear of who I was.

Disability

WHAT IS INTERNAL ABLESIM

OUR BEAUTIFUL CHALLENGES

Now that I have discovered what ableism is and how it relates to my life, let us break down what internal ableism is. A  person consciously or unconsciously believes in harmful messages they heard about their disability and applies themself.

I can think of internal ableism in two ways. Internal ableism is what people have put upon you,  saying you can’t do this or that in life and questioning if you can do something. Then there is the internal ableism you place upon yourself about what you think about the community you belong to.

First, let’s take the internal ableism that people place upon you. My PCA said I was slacking off on my activities and more tired. Then she asked if I could live on my own. When she said this, it upset me. I didn’t want to tell her at the time, but I felt she was ableislizing me and making me think that I wasn’t capable when I had been living on my own for almost three years and the first year and a half was all on my own because of the pandemic. 

She watched videos of others with CP and felt like I was not as independent or pushing myself as much as they were. It is hard for anyone to understand that no CPs are alike and that everyone with CP has their limits and internal ways of pushing themselves. 

I have been fighting this all my life. For many years, I have internalized these assumptions put upon me about having a disability and cerebral palsy.

At this point in my life, I shouldn’t feel this way or let other people make me feel this way.

Now, to the internal ableism that I placed upon myself.

For many years, I was scared of my disability and socializing with anyone in the cerebral palsy community. If I associated with others in the cerebral palsy community, I might not have internalized my fear of the cerebral palsy community as much as I did.

When I was very young and going for physical therapy at the rehab center, feeling if I went near others with more involved CP than I had, I would somehow catch their CP. Growing up, I had a group of friends with disabilities, and I was okay with them.  

As I got older, the internal ableism about myself and CP only grew more aggressive. I was in college, and others with CP would come up to me and want to be friends or ask me on a date; however, I would just run the other way, not wanting to have anything to day with another person with CP. I would make every excuse to say I didn’t want to get to know the person. When the truth was, I wasn’t comfortable with who I was, a person with a disability.

The way I felt about myself and my disability was just getting worse over time. Family and friends would say I should change my outlook on my disability, or else I  would not get anywhere. 

It wasn’t until I got hit with an unwanted disability. At 35, I ended up with PsA (Psoratic Arthritis). When you are born with a disability such as CP, you hope you don’t have any more challenges with your health, but unfortunately, when you have one disability, it doesn’t stop you from getting other health issues. When I developed PsA, I wasn’t sure where my life was going.  

One night,  I was at a fork in the road; if I didn’t pick up my life, I would not return from a dark place.  Looking at my two disabilities now, I needed to accept one. I knew the PsA would go away at some point, but the CP was, is, and will always be a part of me. That night, I began my journey to discovering who I was with CP. 

After many years of internal ableism, my disability I taught myself that just because my disability makes me seen as different, my disability and what people say or think about me shouldn’t stop me from being who I need and want to be.

Disability

BEAUTIFUL CHALLENGES (THE SONG)

OUR BEAUTIFUL CHALLENGES

Beautiful challenges were the one thing she couldn’t see in herself.

The more formidable the challenge was, the more beautiful she became.

The kind of beautiful she was was easy for everyone but her to see.

It took time for her to see the beauty in her challenges.

The beauty of her challenges was that she defeated them with so much grace.

She lived with many challenges.

To her, her challenges were hers and hers alone

She even saw her challenges in her reflection.

Her imperfect reflection of her is that she would never be strong enough for this life.  

She doesn’t remember a day when she didn’t have those challenges. It took time for her to see her challenges as beautiful.

Beautiful challenges were the one thing she couldn’t see in herself.

The more formidable the challenge was, the more beautiful she became.

The kind of beautiful she was was easy for everyone but her to see.

It took time for her to see the beauty in her challenges.

The beauty of her challenges was that she defeated them with so much grace.

Her challenges made her who she is.

She thinks her challenges held her back.

What she didn’t realize was that her challenges were beautiful.

The more challenges she overcame, the more she conquered life.

Conquering her challenges was the most beautiful she could be in life.

Beautiful challenges were the one thing she couldn’t see in herself.

The more formidable the challenge was, the more beautiful she became.

The kind of beautiful she was was easy for everyone but her to see.

It took time for her to see the beauty in her challenges.

The beauty of her challenges was that she defeated them with so much grace.

The beauty in her challenges was in the way she walked, talked, and looked at life.

Life may have been a challenge, but she never gave it a second thought.

All she wanted was to be a part of life, but getting where she wanted to go was challenging. 

She wanted to go as far as she could, but her body would sometimes only let her go so far.

The further her body would let her go, the less she saw her challenges. 

Beautiful challenges were the one thing she couldn’t see in herself.

The more formidable the challenge was, the more beautiful she became.

The kind of beautiful she was was easy for everyone but her to see.

It took time for her to see the beauty in her challenges.

The beauty of her challenges was that she defeated them with so much grace.

The challenge for her was to realize the challenge was not to add more to the challenges she already had.

The beauty of her challenge was that she had days when her challenges wanted so badly to win out, but she wouldn’t let them.

When she overcame her challenges, she proved to others and herself that she had overcome them.

Overcoming her challenges was the one thing she forced because it empowered her to become who she wanted to be.

Empowering herself was the goal to kick her challenges in the ass.

Beautiful challenges were the one thing she couldn’t see in herself.

The more formidable the challenge was, the more beautiful she became.

The kind of beautiful she was was easy for everyone but her to see.

It took time for her to see the beauty in her challenges.

The beauty of her challenges was that she defeated them with so much grace.