Disability

HOW PEOPLE SEE ME…BUT WHO I TRULY AM

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 in me. That is what is called judging what you are visiting with 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 a person, just like you.

Disability

THE CHALLENGES INBETWEEN OUR CHALLENGES

I want to encourage everyone to love themselves. To love ourselves and our lives with disabilities, we need to understand our disabilities and how to work with them, not against them. Even though you see your disability as a weakness, it should be one of your best friends. You will be companions for life. Even the best roommates sometimes quarrel, but you work through the challenges.- Marie W.O.W.C.P.

A question I often get is, “How do I do all that I do?” Then they explain they wouldn’t know if they could do what I do if they had my challenges. I tell them that they will find a way to do their best, and you can go beyond that, just because I don’t mean I want to give up the life I was given because of your challenges. Something my family instilled in me is the strength they have. There are times when I would like to give up. When I feel like I want to give up, I kick myself in the behind.  I was taught never to give up on myself. I was also taught that if there is a challenge in my way, never give up on myself or the challenge. 

The challenges I was given have been the fuel that has kept me going throughout life. Yes, there have been times when I have forgotten to add fuel. I try not to fear life and strive not to give up; what helps me is my spirit. My fighting spirit has also seen me through my challenges. Not many people have a fighting spirit, but I was born with one.

If someone had asked me years ago how to describe my disability and the challenges that it gave me, I would have said it was the one part of me that I wished I could get rid of. If you asked me today what I would say about my disability, I would say it is the one thing that empowers me. So what happened between then and now? 

Life is challenging with cerebral palsy, but what about the challenges that arise between those challenges? Such as adding the life stressor that everyone experiences, whether they are disabled or not. These are the most challenging times for me. I am equipped for life with a disability. Still, it’s the life challenges that are woven into those everyday challenges that I wasn’t prepared for—the aging with CP, getting other genetic disabilities, and illness. Then there are life stressors, which I know none of us are ready for, but for those who already have stressors of their own, the added ones I wasn’t equipped for. I have always been equipped to handle the things that came with having CP, such as the challenges of the spasms, learning to walk, the falls, the breaks, the surgeries, the therapies, and making sure people know I’m more than my disability.

 I needed to learn how to control my emotions. People don’t talk about the emotional side of having CP. While people with CP have normal mental abilities, there are times when it doesn’t seem like it to me. As much as my parents never held back from events, it was still because there were milestones that you have as a child, a teen, or a young adult that I missed out on due to CP or being sheltered from things in life because of the CP. Those times added to my stress because they were the times when I felt different.

Adding unnecessary stress to myself not only made me feel different, but it also made my CP act up, which caused it to throw me off balance and make me fall.  

Sometimes I can’t help but feel stressed by things like ensuring I have enough money to live on, reading or watching the news, and having the PCA I need. As much as I love being independent, the challenges weren’t what I thought they would be.

With all the small challenges between the more significant ones, it’s still worth knowing that no matter what challenges I might face, they are still worth overcoming.

Disability

HELPING HANDS

The series

The word independent is a significant word to someone with cerebral palsy. The slogan of the community is “Life Without Limits.” This motto for a person with cerebral palsy and their loved ones becomes the ultimate goal, which is independence in our lives. There are four main classifications of cerebral palsy:

  • Spastic: 70-80% of the community is in the category with this
  • Dyskinetic: 10-20% of the community are in this type
  • Ataxic: 5-10% of the community have this style
  • Non-CP: about 5%, which means you have cerebral palsy, but someone can hardly see it 

If you are lucky enough (or not), you can have a mixture of two or all three. As for me, I’m mobile with the help of my walker, and am Spactic, Dyskinetic. As much as I can be independent and live life without limits, just like anyone, I have limitations (so part of me doesn’t quite believe in the “life without limits.” It just feels misleading to me); in a way, you do need help in life. Every person–with or without a disability–needs a hand in some way; it’s just about what kind of help a person needs to be independent. It should be “sky’s the limit” or “don’t underestimate us” because we want people to see us for who we are, not by our appearance.

When you have cerebral palsy, there are all kinds of levels of independence. You can have the autonomy of someone who doesn’t need help, then the type of cerebral palsy where you can be independent with minimal support. Lastly, there is the type of cerebral palsy that makes us entirely dependent on other people for help. The type of cerebral palsy that I have means that I can live independently with minimal help. When it comes to applying for this kind of support, it can be  tricky. I have always been caught between a rock and a hard place because I have cerebral palsy, and I need assistance with being otherwise fully independent. Having to ask for help to live independently makes you feel like you can’t be independent or competent to live like other adults. 

Generally, people with a physical or mental disability or seniors who need help with specific everyday tasks use Personal Care Assistants (PCA) services. I knew I had to get a PCA to help me (a Personal Care Assistant/Aide is trained to provide a wide range of services to individuals in their own homes. Still, because I moved on my own right in the middle of the pandemic, I wasn’t sure how that would go; I had to trust that the people who helped me would be a good fit during this time). As much as my parents loved and supported me and did anything for me, they still helped me more than they should have.

After the vaccines became available, I started thinking about getting someone to help by spring. I wasn’t sure how to proceed, but luckily, United Cerebral Palsy had just started a new program and hired an inclusion advocate. The inclusion advocate helps the clients of United Cerebral Palsy live entirely independent lives in the community.

Along with my inclusion advocate, I started working on things to help me be more independent, such as applying for SNAP (food stamps) and looking for and applying to a program that would best fit me for a PCA. Applying for SNAP was a snap (LOL)  (SNAP). Using a PCA took a little more because it involved some research. What kind of help would I need? I had already spent almost a year on my own. 

For me, the central help I need is with heavy cleaning and going food shopping. I’m okay with ensuring the dishes are clean and the daily stuff is organized, but when it comes to heavy cleaning, such as washing clothes, sweeping, mopping, and making my bed, things can get tricky because of my balance. 

The ultimate goal was to make myself independent in the best and safest way possible. Community First Choice was the one that best suited my needs (Community First Choice – CT.gov). The application process was pretty straightforward. This program is excellent because it works on the PCA waiver (Personal Care Assistance | Connecticut)

When the CFC person interviewed me, she was impressed with my independence but could see how fatigued I could become.  A big part of cerebral palsy is becoming quickly fatigued. Every person with cerebral palsy has a level of fatigue; mine can be very severe at times because not only do I have CP,, but I also have psoriatic arthritis (in remission)  Psoriasis – Symptoms and causes – Mayo Clinic). I also have what is known as (Costochondritis – Symptoms and Causes – Mayo Clinic.)  When one of these health conditions acts up, it can debilitate me, let alone allow me to keep up with daily activities. At these times, I am grateful for the help that I have.

It took about a month for CFC to reply that I had been approved for 28 hours a week. The CFC program runs through my insurance, so unless I go over the 28 hours–at which point I would have to pay them out of pocket–all this help is paid for. 

The best part of the CFC program is because they work on the PCA waiver program, I get to pick who I want to help me. There are only two requirements: I can’t be married to the person or be dependent on them. See that either of these things don’t apply to me; I can hire anyone. It would be nice to fill the 28 hours with one person. It would be great, but that would be hard for one person. I have two PCAs, my sister-in-law, and a childhood friend.  It would be nice to add one more, but in time. 

Going through the process of becoming an independent person with a disability (from looking for a place to live to becoming an independent person with some help) has opened my eyes to the challenges of life. Still, there are programs to help people with disabilities be independent with a few good helping hands. 

Disability

SELF LOVE JOURNEY

I want to encourage everyone to love themselves. In order to love ourselves and our lives with disabilities, we need to understand our disabilities and how to work with them, not against them. Even though you see your disability as a weakness, it should be one of your best friends. You are going to be companions for life. Even the best roommates sometimes quarrel, but you work through the challenges.- Marie W.O.W.C.P.

If someone had asked me years ago how to describe my disability and the challenges that it gave me, I would have said it was the one part of me that I wished I could get rid of. If you asked me today what I would say about my disability, I would say it is the one thing that empowers me. So what happened between then and now? 

To understand and appreciate who I am, I had to go through a self-reflection and self-respect journey, which ultimately brought me self-confidence, self-compassion, and self-love. Three things that I thought I already had, but I didn’t. I wasn’t even close. It took me ten years to determine what I needed and wanted. It took me ten years to realize what life wanted from me. It took me ten years to realize that the one thing I saw as a weakness in my mind, body, and life was the one thing that was my greatest strength and empowerment in my life. 

From the moment I was born, my body challenged me, but what showed on the outside to the world wasn’t what I felt on the inside. What I felt on the inside was fear, imperfections, and the sense that I couldn’t be more than what my body showed the world. What I didn’t realize was that I was showing internalized ableism. 

Internalized ableism was challenging for me to understand and grow out of. (I have explained what internalized ableism is in a past blog post. So I won’t get into it. Please feel free to go back and read it if you want to know what it means.) I had to tear myself apart to build myself up again. I was feeding myself all the negativity that others were feeding me, and after a while, I started feeling and thinking I was all those things. I also added more to it because I was afraid of going near others who had disabilities. Most of all, I was scared of being with others with cerebral palsy. It was a hard pill to swallow when all I wanted was for others to see me without a disability, but then I was doing what others were doing, too, and I was only seeing disabilities in others. 

I always felt as if I was superior to the cerebral palsy community. I felt like I was in three parts: the woman side of me wanted so badly to be on the same page as other women her age, such as wanting a job and family. There was the Cerebral Palsy side of me that I feared would overshadow me, even though I didn’t know who I was at the same time. And lastly, there was me, who I thought I knew I was. I felt I could be like everyone else and have everything I wanted. It sounds silly, but I felt that if I didn’t see myself as a “disabled person,” then I wasn’t one. I knew what I wanted and what I was capable of, and it was always hard when other people brought me back down to reality by seeing my disability instead of the version I saw.

It wasn’t until I was alone during the pandemic that I had to reflect on who I was and wanted to be. Three months after the pandemic started, I could move into my apartment. This was my first time alone, and I didn’t expect it to be under these weird circumstances. My computer became my best friend. I found myself writing down all my thoughts and goals and reflecting on my feelings in the past.

Spending a year and a half with little contact with the world taught me my journey in life and how my challenges helped me become who I am today. By sharing all of this, I hope to inspire people to live in the moment and realize that we are a collection of our past, present, and even our dreams for the future. We can’t know who we are if we don’t spend time with ourselves, good and bad. 

I invented an exercise that helped me. I sat in front of my mirror, and at first, it was about looking at the physical part of myself, but then I realized it was about looking inside myself. I needed to sort out my life like a crowded attic full of dusty boxes. I needed to unpack my life story to figure out what I needed to throw out or polish up and keep. Doing this helped me grow.

Disability

MUSIC IS MY DRUG

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

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

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)

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)

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

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.