Tag: Disability

Life can be challenging when you live with a physical disability, but it doesn’t mean we have to give in to our physical limitations. Join me in taking a peaking behind the walker. I will show you how to be your best self-advocate, live independently, and all around just enjoy life—in contrast to living with a physical disability. I have my ups and downs, but I try not to give in to these downs. However, I also know that life isn’t always joyous. Still, life is what we make it. I try to find the positive and joy between those challenges. Disabled or not, life is meant to be enjoyed.

Follow me to see how I use it. I went from not fully understanding who I was with a disability to using my disability to empower myself.

Disability

MUSIC IS MY DRUG

OUR BEAUTIFUL CHALLENGES

Music is the sound of silence in a room full of noise. It is a friend when you need a friend. Music isn’t a movement that makes sense. Music can help you through any challenging, sad, lonely, or joyful time in life. It can make your heart light or heavy. Having cerebral palsy, music is the constant friend that I can lean on when no one is around.

Not only does the community have a hard time seeing past disabilities, but at some point in the life of a person with a disability, they will have trouble seeing past their disability. As people with a disability, we fight so much for others to see past the disability. We focus on making people see past the disability and forget that we are more than the disability. I had forgotten I was more than CP in the last few years because I wanted to see what CP was like as an adult. As a kid, I was in the back seat as my parents were in the driver’s seat doing so much to advocate for me, but I needed to support myself as a competent adult. I ran from my CP for so long that I needed to devote myself to knowing what CP would be like as an adult. 

When you devote your life to something, you forget about other parts of yourself. This part of my life is over. At the beginning of this chapter of my life, both sides of me were two separate parts of life; it was more that I wanted to intertwine these two sides of me. There was who I was; then there was the CP side. I was never sure if I wanted the two sides to be one because I saw my CP as my weakness. Once I devoted this period of my life to getting to know my CP. I learned that CP wasn’t my weakness but my strength. That was when I felt comfortable making these two sides become one.

Now, who is Josephine without? I’m Josephine, (I am) an average person who likes to do average things. One of the things I lost when trying to find who I was as an adult with CP was my passion for music. When I was born, my mom said they had put music next to me in the incubator crib from day one of my life. Music has been the one friend that has always been a comfort, and it’s a friend that I can turn to get my mind off of the CP.

The frustration of having limitations because of my CP has always been my source of anger and depression. Throughout life, music has always been the getaway of the pain, depression, and frustration that comes when you live with a disability that gives you limitations. The music comforts me when I’m down and pumps me up when I need a pep in my step.

Music is like a drug I can’t get enough of, like a bird to a birdfeeder. Music, for me, goes much deeper than the lyrics or meaning. It’s one thing that makes me feel free in a way that I can’t feel free. I think the rhythm throughout my body. When my cp is out of whack, I can pump the music in my ears, and the cp relaxes. I’m unsure why this happens, but I can’t explain its power over the CP. When my CP goes out of whack, it craves a specific genre of music. When my body is out of whack because of anger, my body craves punk rock such as Blink 182, Nirvana, and Collective Soul; when my body feels mellow, I go to contemporary such as Matchbox20, Andy Grammer, Jason Marz. I can feel the music from big bands to jazz, rap to country. Finally, R&B and the ’90s gave me the energy. When I go to a concert or somewhere with loud music, I feel like I’m in a pool, swimming freely to the point my body is unaffected by the CP.

Another aspect of music that interests me is how the pieces are put together. The skills and talent involved have always fascinated me. Growing up, I struggled a lot in school because I had many learning disabilities; I just learned what I needed to get by in life and never really explored other things. 

My dream was to be a DJ. When I started college, being a DJ, you needed steady hand skills, unlike nowadays, which is more digital. My dream of being a DJ didn’t come true; however, my passion for music still gets more profound love. I study and read about music as much as I can. I love the side of music: how people put the music together, what goes behind the song, how the song comes about. I’m not sure why I’m drawn to this site, but I find it attractive. 

When I realized my dream of being a DJ wouldn’t become a reality, music again had a new meaning for me, and I started to study it independently. I read books about what made artists appear in the music industry and how they got involved in music. Not only do I read about the artists and the music industry, but I also enjoy reading about what music does to the brain.

 I am fascinated by how the brain works because of my CP and its power on the body. I don’t like taking medicine if I don’t have to. I can get by just listening to music for the pain to go away; I find that music is not only influential on me as a person but is also influential on my disability.

Disability

DIVERSITY

OUR BEAUTIFUL CHALLENGES

Today is all about diversity in the world. So many different cultures and communities want to be represented and have every right to be represented. Unfortunately, the disabled community still doesn’t deserve recognition and respect.  Growing up with a disability, the fight I had to be in school and to be in the able-bodied community was one that I hated to admit.  From having no parking spaces or curb cut-off for people with disabilities to teachers thinking I wasn’t teachable.

I look at how far the diversity of people with disabilities has come, and however, there is still more to overcome because the community isn’t as diverse as we should be. Taking “MENTOR,” a summer program about mindfulness, exercise, and nutrition to optimize resilience, has opened my eyes to what it might be like to receive a disability later in life.  Being in “MENTOR” showed me how much diversity could be in just one community.

Being disabled, there were many times in my life I was in groups with people with other disabilities that were not always related to my disability. However, my friends weren’t born with their disabilities; getting to know another side of the disabilities as I did during “MENTOR” was an eye opener regarding contact with another aspect of the disability community.

Now, having my eyes opened to another aspect of my community has me questioning how I view diversity within myself. Before understanding other communities, I need to stay within my community to understand its diversity; I must fully understand the diversity in my community. Just like your family teaches you when you are young, learning starts at home.

Diversity can be a positive thing in the world. However, the persons or groups fighting for their community’s rights should consider how educated they are in what they are fighting for. There are so many diversity issues, but understanding comes first. My family taught us that no matter what community we are a part of, we must educate ourselves to inform those ignorant people.  

People need to educate themselves about available accommodations. They also must scrutinize themselves to know what they can and can’t do. It’s essential to say, “I have a disability; this can help me.” It’s also important not to allow your disability to take away your independence by asking for accommodations you don’t need. That is how I was raised. I was raised that no matter my rights as a person with a disability, I should never take advantage of them by using things I don’t need. My family has taught me to work for what I have the right to do/have and not to expect anything to be owed. To me, this is what diversity was and still should be.

Disability

WHAT I’M NOT

OUR BEAUTIFUL CHALLENGES

What I am not is the first thing you see.

What I am not is the six legs I used to walk around. 

What I am not is the handlebars I hold onto. 

What I am not is what you see when I walk into a room. 

What I am not is the way you see me on the outside. 

What I am is a person who is just like you. 

What I am is someone with self-worth.

What I am is someone with intelligence. 

What I am is someone with dreams.

What I am is someone with hopes.

What I am not like another person with a disability that you know

What I am not is the label that I was born with 

What I am not is your inspiration 

What I am not the only person in the room with a walker.

What I am not is taking up space in life.

What I am not is letting my disability stop me. 

What I am not is letting my disability affect how I live life.

What I am not is allowing myself to give up on myself.

What I am not is letting my challenges get in my way.

What I am not is letting my fears get in the way. 

What I am is a creative person.

What I am is someone who gives love.

What I am is someone who receives love.

What I am is someone who loves life.

What I am is what you see, what you see me. That is what is called judging what you are visiting in your eyes. When you judge with your eyes, you miss out on life because life is much more than what you see on the outside. When you remove the walker and the disability, all that is life is a person just like you. 

Disability

COFFEE WITH GOD (WK 2 01/12)

OUR BEAUTIFUL CHALLENGES

Dear GOD,

I tried to write to you every Sunday last year, but it didn’t last long. This year, I want to write to you. I have two goals: To get myself healthy and not rely too much on people. I gained a lot of weight, and it affected my independence. I take so much pride in my independence and don’t want to give it up because I can’t keep my mouth shut from eating. I’m not calling upon you because I feel we have that connection yet. If I did call upon you, I would feel I was using you as a 911 button. I fell. 

Second, I would like to have a relationship with you so that when I feel like I need to call upon you, I won’t feel awkward. You don’t judge anyone, but I still judge myself when I feel as if I want to ask you something. For me, it feels as if I’m asking someone I don’t know for money.  A few years ago, I started this program. A lot of it is based on spirituality. I know spirituality and that you are two different things, but you do go hand in hand most of the time. The program has all kinds of people with disabilities. My biggest why is that people with disabilities believe in you and trust in you so much. My mom told me once that people need someone to cling to and gest your it. I just don’t that way. I was born this way for a reason I may not know what that reason is but that ok. It took me very long time to know who I am. There have been parts of me that I haven’t like because of my disability. It was challeging for me to see that when empowered my disability not only did my disability win I won to. For me it wasn’t about believing in you it was about believing in myself.

Did you help me believe in myself? Maybe, but I won’t give you all the credit.

Until next week. 

Thank You,

Marie

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

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.