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

WHEN LOVE CHALLED MY ABLEISM

OUR BEAUTIFUL CHALLENGES

 When Love Challenged My Ableism

For a long time, I told myself I could never date someone else with a disability.

I didn’t say it out loud—not in a way that sounded cruel—but the belief was there. Quiet. Heavy. Sitting just beneath the surface. I told myself it would be too hard, too complicated, too close to the parts of myself I was still struggling to accept.

The truth is, I wasn’t afraid of their disability.
I was afraid of my own.

This was my internalized ableism—beliefs I had absorbed over years of being underestimated, overlooked, and made to feel like “less.” Somewhere along the way, I started believing that loving someone with a disability meant doubling my limitations instead of expanding my life. I thought love needed to look normal to be safe.

And then life did what it does best—it challenged me.

George was one of the first people who showed me that connection didn’t need to fit a traditional mold to be real. We met as children through early intervention programs, surrounded by families who understood disability before we did. As adults, when we found each other again, our bond didn’t turn into romance—but it didn’t disappear either. George taught me that love can exist without romance, and still be deep, steady, and lifelong.

Thomas challenged me in a different way. When I met him through an online cerebral palsy community, I was cautious—maybe even guarded. He had cerebral palsy and was deaf, and communication required patience, creativity, and vulnerability. Our relationship forced me to confront intimacy in ways I never had before. It wasn’t easy. It wasn’t simple. But it showed me that connection doesn’t come from convenience—it comes from effort and trust. Even when our romantic relationship changed, the bond remained. Thomas taught me that love doesn’t fail just because it changes shape.

And then there was Lorenzo.

Lorenzo entered my life slowly—so slowly that for years, I didn’t realize what he was teaching me. We met on public transportation, saw each other on and off for years, and kept in touch through texts and calls that never quite turned into dates. I told myself we were just friends. But what I was really doing was protecting myself.

By the time Lorenzo and I finally came together, I had already loved two people with disabilities—despite once swearing I never would. And loving him felt different. Not because he didn’t have a disability, but because I had finally stopped running from mine.

Loving Lorenzo meant building a life that works instead of chasing one that looks right. It meant facing systems that punish disabled people for committing to each other. It meant redefining independence, partnership, and even marriage. And it meant realizing that the very thing I once feared—loving someone who understood disability from the inside—was the thing that finally allowed me to feel fully seen.

Looking back, I see how wrong my earlier belief was.

Loving people with disabilities didn’t limit my life.
It expanded it.

George taught me about steady love.
Thomas taught me about vulnerable love.
Lorenzo taught me about shared love.

And all three taught me how to love myself.

Internalized ableism told me I needed distance from disability to be happy.
Love taught me I needed honesty.

Gratitude

I am grateful for the relationships that challenged my fear.
I am grateful for the people who reflected parts of myself I once tried to hide.
And I am grateful that I learned this truth, even if it took time:

The problem was never disability.
The problem was believing I had to escape it to be worthy of love.

Disability

LOVE IN DIFFERENT SHAPE

OUR BEAUTIFUL CHALLENGES

For a long time, I believed something very strongly:
I didn’t want to fall in love with someone who had a disability.

Not because I didn’t respect people with disabilities—but because I was still struggling to accept my own. Loving someone else with challenges felt overwhelming when I was still learning how to live inside my body, my needs, and my limits. I thought loving someone without a disability would somehow make life easier.

What I didn’t understand then was that I wasn’t afraid of their disability.
I was afraid of facing mine.

Life has a way of gently—and sometimes stubbornly—teaching us what we need to learn.

Some of my earliest lessons about connection began during the Birth to Three program. While the children learned and played, parents gathered in another room, sharing fears, victories, and survival strategies. Disability didn’t feel isolating there. It felt shared.

That’s where I met George.

George had Prader-Willi syndrome, a rare genetic condition that affects growth, hunger, learning, and emotional regulation. As kids, none of that mattered. Our families leaned on each other, and for a while, our lives were deeply intertwined—until time and adulthood pulled us apart.

Years later, we found each other again in the most ordinary way—on a bus. Then again through the transportation company we both used. Conversations grew longer. Drivers teased us, telling me I should meet someone they didn’t realize I already knew.

We went on a date. We tried to be more than friends. But our disabilities were different, and romance never quite fit.

What did fit was the bond.

For more than twenty years, George has been one of the greatest loves of my life. We share a love of cars, motorcycles, family, sports, and showing up for each other—through big moments and small ones. He taught me that love doesn’t need romance to be real.

Later, after starting WOWCP—Workout With Cerebral Palsy—I met Thomas.

I had already read his story. I had shared it. And suddenly, there he was.

Thomas had cerebral palsy and was deaf due to complications from CP. Trust came slowly. Communication took creativity. Our phone conversations required a third person to relay between us. It was strange at first—getting to know a man through someone else’s voice—but connection found a way.

We fell in love.

Our relationship lasted several years, until COVID changed everything. Distance, life changes, and growth shifted us into something new. Ending the romantic relationship was painful, but what remained was deeper—a friendship rooted in honesty and respect. Thomas is one of my closest friends, and he always will be.

Then there was Lorenzo.

By the time he entered my life, I wasn’t running from disability anymore—mine or anyone else’s. I knew who I was. I knew what I needed.

Lorenzo didn’t arrive dramatically. He arrived naturally.

We’ve been together for four years now. We would love to live together. We would love to get married. But the systems meant to support us would take too much away if we did. So we adapted.

He lives in the apartment next to mine.

It’s not the dream I once imagined—but it’s the life that fits us.

Looking back, the truth is undeniable:
The three greatest loves of my life all live with disabilities.

Through them, I learned how to love deeply, patiently, and honestly.
More importantly, I learned how to love myself.

Gratitude, I’ve learned, isn’t about getting the life you imagined.
It’s about recognizing the life that shaped you.

And for every version of love that taught me how to accept myself, I am endlessly grateful.

Disability

Why Society Needs to Stop Grouping Disabilities and Aging Together

OUR BEAUTIFUL CHALLENGES

There are many different kinds of disabilities in the world, and I live with a physical disability just like so many others. One of the biggest frustrations I have with today’s society is how often people lump physical disabilities together with age-related disabilities. For some reason, society places the disability community and senior citizens in the same category, as though our lived experiences automatically line up.

I understand that aging brings changes—new aches, pains, and challenges. But seniors will never experience even half of what someone born with a physical disability goes through over a lifetime. So why are these two very different communities treated as one?

Yes, age-related limitations may qualify as disabilities, but they are not the same as being born with a disability or acquiring one early in life. What bothers me is that society doesn’t see the difference. Instead, they pile everyone with any type of disability into one group, as if we all face the same struggles and need the same kind of support.

I say this with love because I genuinely care about seniors. I study gerontology and have a passion for the elderly. And I respect disabilities that aren’t physical—mental health, cognitive, and more. But when you put people with completely different abilities and needs together in the same low-income building just because society doesn’t know where else to place them, it doesn’t work.

I know this firsthand. I’ve been living on my own for five years with cerebral palsy in a low-income rental building. It gets overwhelming—especially when I’m the only one here with a lifelong physical disability. Through this, I’ve learned something important:
There is a significant difference between being born with a disability, having a disability from aging, and having a mental or cognitive disability.

These differences matter. They shape our everyday lives, our independence, and the support systems we need.

There has to be a middle ground—a place for physically disabled adults who are independent, low-income, and not elderly. A place where we’re not forced into environments that don’t reflect our needs or our lived realities.

We deserve communities that see us clearly—not ones that group us together because it’s easier.

Disability

MAINTENANCE CHECK-UP

OUR BEAUTIFUL CHALLENGES

I feel like a young kid lately. Typically, I go to physical therapy twice a year. Once, when winter turns into spring, and again when summer turns into fall. These are the two times of year when the temperature is so unpredictable that it throws my cerebral palsy off. I just need some adjustment—my twice-a-year maintenance check-up. 

I have been performing maintenance check-ups for about twenty years now. I’ve also had many surgeries, including the following:

1) to cut out some of my quad muscle because my spasticity got so tight that it made some of my quad muscle form into a knot. It could only be removed surgically. 

2) I broke my right leg, and because of my cerebral palsy, I had to have a few surgeries to put it back together.

3) Lastly, I had a knee replacement that went wrong, and not only did I break the new knee, but I also broke the femur bone, so it took two years to recover from this. 

Every time I went to therapy following those surgeries, it was always someone who worked in sports rehab. The therapists were always so great to me and became like family. They did everything they could to get me back where I needed to be. They also made my cerebral palsy comfortable. 

I was also afraid to move on and see a new therapist. But now that I’m going to therapists who specialize in neuromuscular disabilities, I can see the difference. I will always be grateful for sports rehab and how it helped me recover from my surgeries, but I know I’m in the correct place for my needs now. 

I have always gone to see a neurologist for my cerebral palsy, but my friends in the cerebral palsy community would say, “Why aren’t you seeing a Movement disorder specialist?” A Movement disorder specialist undergoes the same education as a neurologist, with an additional one or two years of training that focuses on movement disorders, such as CP, MS, Parkinson’s, and other movement disorders. A movement doctor has additional training in various areas, including Botox, Deep Brain Stimulation, and clinical trial methodology. A lot of people assume Botox is just a beauty treatment, but its original purpose is pain management and helping the disability community.

The Movement disorder specialist I’m seeing now is delightful and listens to my concerns. She made sure I went for PT and OT so that I could get the Botox to work the way it should work. I wanted to go to the therapist I usually would go to, but they didn’t have the equipment I needed. Going to a new PT, I wasn’t sure what to expect because it had been years since I had gone to a new therapist. When I started, it felt a bit weird at first, but it also felt good because I was starting fresh. I quickly fell in love with the exercises the therapist had me do. She is currently helping me work on my own goals, such as taking one or two stairs so I can get into the house when I visit people I love.

My therapist focuses on things that help with my Active Daily Living. While I would work on those with my other therapist, she was more of a sports therapist, which meant she was working with people who had never lived with a lifelong disability. The therapist I’m working with now is trained more in brain injury. I feel as if I’m getting a lot out of it. I’m seeing a slight improvement in myself.

I now see the difference between sports medicine therapy and neurological therapy. At the same time, both have been beneficial for me. Right now, in my life, I need more neurological therapy. I’m so thankful to have a supportive community to help me reach my goals, and I appreciate the people who devote their education and profession to helping people like me live our best and most active lives.

Disability

WHY WAS IT SO IMPORTIANT FOR ME TO LIVE INDEPENDENTLY AS SOMEONE WITH CP?

OUR BEAUTIFUL CHALLENGES

 There are several reasons it is essential to live independently. The main reason was to prove to myself that I could live independently, and another reason was that the people around me would also see that I could live independently. Moving around my environment alone was the one thing that I felt would make me feel like I had reached independence,  not only as someone with CP but as someone who had been labeled all my life. 

At points in my life, many people have only seen me through a label. After many years of being viewed and treated as a label, you begin to see yourself as that label. I also began to see myself as a label, which caused me to try to do anything I could to escape that label. I lived with CP but did everything possible to look at it in the rearview mirror. All I ever wanted was to be more like my peers. 

What many people do not discuss regarding CP is the emotional component accompanying the disability. My family made me as independent as possible, but there were many things that I was unable to be a part of because of having CP. The other kids often did not want me to be a part of something because of the CP, or did not understand what I was ABLE to do even with my CP.  In return, I lost much of my childhood while being excluded.

In my 20s, when most young adults were starting to make their mark and begin their adult lives, I fell short of the same goal. I did my fair share of young 20s stuff, but I needed to expand my 20s experiences at that time. As I neared the end of my twenties, I began to notice the disparity between my emotional and chronological ages. Chronologically, I was ready to do everything everyone my age was doing. Still, emotionally, I felt ten years behind everyone my age, mostly because I lacked the experiences of social interaction that would have defined and shaped my adulthood.

I was unsure whether I would be able to live independently. I had to learn about life, act the age I was chronologically, and accept who I was as a person with cerebral palsy. It was then that I started to see a therapist.  When I first started, it wasn’t hard to open up and talk. However, talking about the hard things and why I was going to a therapist was difficult. The therapist’s first suggestion was that if it was going to be hard to talk about at that moment, I should keep a journal so that when we met, I could bring it. I would be able to read from the journal, and it would make it easier for me to talk and more manageable for her to help.

Once we got through the first couple of weeks, she started with cognitive behavioral therapy (CBT, a talk therapy). CBT returned my thinking about life and living with a disability. If I could teach any younger person with CP or another physical disability, I would tell them that just because our bodies don’t work like our peers doesn’t mean we can’t ‘live like our peers’; it just might take some time and some modifications. While I have learned so much during this time, I still see a therapist because living with a disability will always be challenging. 

After getting the emotional and mental help I needed, I could see that just because I have cerebral palsy doesn’t mean I couldn’t live the life I wanted. Now that I was getting back on a more positive mental track and could see life in a new way, I was ready to move on with life. 

I was excited about moving on independently, but I had a major setback; I fell and broke my lower right leg. Healing would take six months to a year. Still, because of the cerebral palsy and spasms from the cerebral palsy, it kept breaking, so two years after multiple surgeries and two years ago, I was back where I started. 

After about two years of being back on my feet, I got hit with PsA (Psoriatic arthritis). It took almost a year to realize I had PsA. While having PsA, I couldn’t do anything without help because it interfered with my cerebral palsy. After spending over five years struggling with PsA, I just wanted to give up. The PsA went into remission, and I got a knee replacement. Having a knee replacement is a story within itself. ( If I ever were to write a book, it would take up a chapter or two.)

Again, after all this, I questioned if I could ever live independently. I tried not to get down on myself again, but it was hard not to. However, now I had some therapeutic tools to help me through this dark period of my life.  Having a long recovery from the knee replacement and making it through this difficult time with much more emotional education about myself, I was finally ready to move on with life.

Only a short time after this, my parents were getting older, and they also needed to allow me to be more independent.  My parents ALWAYS told me to be independent, and knew they needed to let me move on. They were still there to help and support me, because no matter what point in their life, they would always be there for me and knew how important my independence would be to me and my entire family.  

In late fall 2019, I listed my name on a few housing sites for senior and disability housing. A few months later, the pandemic started in the summer of 2020. Just as the world was closing, my world was opening up. Less than a year after applying for housing, I received a letter stating that an apartment was available and inquired if I would like to visit to see if it met my needs. 

My mom and I went to check it out, and it had a mom-and-pop grocery shop in the driveway. Other than that, I had sidewalks leading up to the center of town where there were places to eat, coffee shops, banks, and more than I would need every day, and all I would have to do was walk less than half a mile. So I took it.

I was able to move in at the end of that summer. Seeing the world closed down, my idea of leaving wasn’t what I had in mind. When my family moved me in, it was as if they had left and locked me in to be myself. Due to the pandemic, no one could visit, so I was only with my family. I couldn’t have face-to-face contact with other friends, so I relied on social media and Zoom sessions.

The first year and a half of my life were tranquil due to the pandemic, and I could only have family members.  

I would have thought I would have felt lost being alone for that amount of time, but no, because all the CBT training had helped; I had a mental toolbox of tricks to use. One of my most significant activities was to return to my writing. When I started writing years ago, it was about things that did not matter or only mattered at that moment. I was able to do a lot of soul-searching and fully accept who I was, recognizing what I had overcome to get where I am today.
Life is a challenge for everyone, from start to finish. I have finally learned at this time in my life that I should not waste time worrying about things I cannot control. Instead, enjoy the moments I have to share with family and friends and make the most of them. Not to look at my life through my disability and limitations, but remember how far I have come and live my best life independently, never forgetting the people who love and support me, no matter what.

Disability

PAVING THE WAY

OUR BEAUTIFUL CHALLENGES

When you have a disability, you miss out on a lot in life, but you also gain a lot too. You’re a part of things that you might not be a part of if you weren’t disabled. I am lucky enough to be part of a community that is dedicated to helping and paving the way for the future generations of people who have disabilities. I feel fortunate to be born at a time in life that I was blessed enough to have witnessed two laws that made it possible for me and others with disability to be treated like others: The 504 Act of 1973 and the ADA Act of 1990. 

The 504 or Rehabilitation Act gives people with disabilities the right to be in public, including in public schools and public buildings, which must be made accessible for us to enter.

Although the 504 Act gave us the right to be in public, the ADA Act ensures that all public buildings are accessible (including wheelchair ramps, working elevators, lowered curbs, and accessible bathrooms). To this day, all public buildings must be ADA compliant. This bill was signed into law in July 1990, which is why July is recognized as Disability Pride Month.

As much as it made it possible for me and others with disabilities to be among society, it took a while for society to realize the disability community is here to stay. Being so young at the time, I didn’t fully understand or appreciate the impact of my presence. I was making it easier for the next generation to be understood. 

My mother was a teacher’s assistant in the school system I attended. When I was in school, I recall the frequent arguments my parents had so that I would have a fair chance of the same experience and education as all the other students. The teachers and even the lunchroom monitors didn’t think I had the right to be there. The teachers thought I was just there, taking away resources from students they felt were more worthy of an education because they were non-disabled. My parents fought for me to be a fundamental part of the school, because even the parking lot wasn’t accessible. But once my mom became a teacher’s assistant and advocated for me, the teachers who initially discouraged me all changed their tune. Even though the law protected my right to be there, there was no law to change the minds of teachers who were set in their ways and stuck in the past.

I recall my parents contacting the state to report a shortage of accessible parking spaces, curb cuts, elevators, and ramps. The town was cited for not being accessible and had to make necessary upgrades. When I was in junior high school, classes were delayed for two weeks so that an elevator could be installed properly.

Hopefully, the current disability community and future generations can enjoy these accommodations without having to fight for the same rights everyone should have. 

Nowadays, looking at what disabled kids have in school humbles me. I know that I was one of the pioneers to accommodate kids like me, even those who weren’t born yet. 

It inspires me to keep fighting. If something isn’t accessible now, I speak up, keeping the same spirit that my parents had for me. In a way, kids with disabilities are all our kids, too, and we have a responsibility to advocate for them. I’m not just a student but also a teacher. I teach people how to accept people with disabilities and how to treat us (hint: we’re just like everyone else!)

Disability

HOW PEOPLE SEE ME…BUT WHO I TRULY AM

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 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

OUR BEAUTIFUL 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

OUR BEAUTIFUL CHALLENGES

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

OUR BEAUTIFUL CHALLENGES

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.