Disability

ACCEPTED

OUR BEAUTIFUL CHALLENGES

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disability

THE FRUSTRAD BODY

OUR BEAUTIFUL CHALLENGES

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

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

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

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

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

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

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

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

Disability

Obligatory New Years Resolution Blog

OUR BEAUTIFUL CHALLENGES

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

Below is my list of personal resolutions. 

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

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

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

Disability

MONASTERY

OUR BEAUTIFUL CHALLENGES

Dear God,

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

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

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

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

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

Disability

WHAT TYPE OF PERSON DO YOU IDENTIFY

OUR BEAUTIFUL CHALLENGES

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

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

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

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

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

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

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

Disability

WHAT AM I AFRAID OF

OUR BEAUTIFUL CHALLENGES

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

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

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

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

Disability

WHAT IS INTERNAL ABLESIM

OUR BEAUTIFUL CHALLENGES

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disability

BEAUTIFUL CHALLENGES (THE SONG)

OUR BEAUTIFUL CHALLENGES

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

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

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

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

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

She lived with many challenges.

To her, her challenges were hers and hers alone

She even saw her challenges in her reflection.

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

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

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

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

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

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

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

Her challenges made her who she is.

She thinks her challenges held her back.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disability

WHAT IS ABLEISM

OUR BEAUTIFUL CHALLENGES

I have to be honest; I only learned about ableism and internal ableism not too long ago during a Zoom meeting. As someone with a disability who claims to be a mentor for people with disabilities, why didn’t I know what internalism and ableism are? I should be embarrassed. I had to go back and look up ableism and internal ableism to understand what they entirely meant. As I was reading about them, glimpses of times in my life when I felt I was a burden to people or groups came rushing back. Knowing there were terms to describe what I was going through at those times put a whole new meaning to those experiences in my life. 

Let’s first break down ableism and what it means, as I had experienced and felt when it came to ableism.

Ableism is discrimination against a person with a disability. Knowing what ableism is now, I can genuinely say ableism has affected me from an early age. Ableism is what made me stand out throughout my childhood.

I was born in the late ’70s  and grew up in the ’80s and ‘90s while experiencing ableism. Although I have cerebral palsy, my family has always integrated me with non-disabled children. I attended school in my hometown. Growing up during this time, the ADA Act of 1973 stated that everyone with a disability had the right to be in public places and the right to an education just like others. You might imagine that having this law would make life easier. While the law was written to give people like me and others with disabilities all these rights, it was not easy to get people to change their outlook on those with disabilities and follow through on the law.

Growing up in a small farming town in the 1980s and ’90s was challenging. As the saying goes, it felt like my family and I were rocking the boat. 

I started school at an early age. Teachers were unsure how to teach someone like me; they would say I was unteachable and I was just taking the place of another child who could be there. In music class, they wouldn’t let me use a recorder, and I drooled too much to try it, or they didn’t want me in the lunch room because I would sometimes chew with my mouth open. 

The other kids did not give me trouble, but the educators showed me ableism when they were the ones who should have been educating me and the others around me. The educators should have been helping, teaching me about life, and helping me overcome my challenges, but in the end, they added more challenges to a young child’s life.  My school district eventually became more integrated, bringing more severely disabled students back into our hometown school community.

I was almost denied the education that I deserved from the start.  The school had to make classes to accommodate me and others needing the same or similar accommodations. It can be hard to change an educated mind if they have worked under a specific premise for years. When given a student who needed all these varied accommodations and help to understand what I was going through, it was difficult for the educators to meet my specific needs. Looking back on those times and being the person I am today, I can better understand how difficult it might have been for some educators to change their teaching style to accommodate me. I am not saying what they did was right because it wasn’t, but I can understand how hard it might be for someone with a particular philosophy or style to change their style to meet an INDIVIDUAL student’s needs.

There was yet another hurdle when the ADA Act of 1990 came around. The ADA Act of 1990 states that public and federal buildings should accommodate all people, no matter race or disability. That means many things:  all buildings should be made to accommodate those who need their physical needs met; all parking lots should have enough accessible parking, curb-cut offs, doors, halls, and restrooms to accommodate physical limitations. The results from my family taking on these physical barriers for me are evident today. People are unaware of this initial struggle and may take today’s accommodations for granted. Yet, my family and I pioneered changing our small town in the USA. 

While trying to complete this assignment, I contacted one of my first teachers with me from day one of my public school experience. I want to share her experience as a teacher at that particular time in my life. She provided insight from an educator’s perspective. “As a teacher, we had to assure other teaching professionals of what we could do. To encourage them to continue to challenge you while meeting your specific needs. It took a long time for building improvements to take place to allow you to be more independent throughout the physical school building. As a result, you sometimes required one-on-one paraprofessional support, not due to YOUR physical limitations but due to your physical environments and the existing physical barriers within the school setting”.

I didn’t realize at the time that I may have felt like the odd one out, but I was not only giving myself the right to access public buildings but paving the way for those who followed after me as well. If I were to attend my hometown high school at present, there would be so much more they could offer me to support my ‘ABILITIES’:more integrated classrooms, opportunities for community involvement (Best Buddies, Unified Sports, etc.), and a transition program for 18 to 21-year-olds.  I was lucky to have a supportive family and the strength to challenge myself by taking courses at a local community college and continuing my educational experiences online, creating a personal connection to others with CP.  I demonstrated what adults with CP were capable of when given a chance. Also, creating dialogue and essential discussions around issues other adults with CP could relate to. At the same time, opening the eyes of the non-disabled to understand better what adults with CP were capable of. I created awareness, compassion, and empathy for those discriminated against due to ‘ABLEISM.’

Disability

ASSERTIVENESS

OUR BEAUTIFUL CHALLENGES

I’m not an assertive person because I don’t want to rock the boat, and I don’t want people to think that I’m using my disability to demand that I have everything like yesterday. I’m not that way, and I will never be that way. However, because I have a disability, I need to be assertive because I need to be seen and taken for an average person, not defined by my disability. I must remember I am the boss in my self-advocacy, but I’m also the boss of three people who help me daily. I also want to be more assertive with medical professionals and, most of all, with myself.  

So, what is assertiveness? It is confident and forceful behavior. Assertiveness is when you stand up for what you want or need, respecting yourself or the people you rely on to tell what you want/need. As a person with a disability, I need to learn to be assertive so people can take me seriously. I have always been a team player. I can be assertive when I’m playing on a team to help get stuff done, but when I need to be assertive for myself. I feel like I can’t because of what is inside me, angry and scared that I’m not sure if I would be able to control myself.

It has taken years to understand myself when it comes to having a disability, but I did teach myself about my disability. Now, I’m comfortable with being a person with a disability. I should be able to teach myself how to be assertive and how to do it in a way that doesn’t make me feel like a crybaby, scared, nervous, or that I’m using my “disability card” to get what I want.

On the other hand, I’m doing myself a disservice by not speaking up for myself, which means I’m not getting my needs met. Due to my disability, I genuinely need to have more assertiveness to be able to keep my independence. I need to have more assertiveness because I’m now a boss, a girlfriend, and my own person; I’m getting older, and my disability is aggravating the aging process. If I can’t speak up for myself, I won’t get what I need.

Others take me for granted and only see my disability. Stereotypes shape their perceptions. Because I need to ask for more than those without disabilities, people who don’t understand think I’m asking for too much. 

Some misconceptions of people with disabilities are based on people they have met in the past or fictional characters (who may not have been well-researched).

Misconceptions:

  • We can’t be educated: When I was in school, teachers thought I was wasting space needed for “normal” kids. They didn’t like me eating in the lunch room because I needed to chew with my mouth open. Even though perceptions of disability were evolving, teachers who had been there for a long time and were set in their ways refused to change their perspective. I was forced to live in the past with them. However, I had the same IQ as my classmates and was just as capable of learning. The IQ tests were so outdated that I was forced to do agility tests, which determined my intelligence, so being unable to use my hands quickly labeled me “low IQ.” I wasn’t allowed in gym class in high school. Because there weren’t accommodations for students with disabilities, I was expected to exist in the shadows. I have been forced to prioritize the comfort of others by either being quiet or being the stereotype they want people with disabilities to be.
  • We can’t speak for ourselves: When I go to a restaurant, the server will ask my dining partner, “What does she want?” If I see a new doctor, they automatically invite my mom in with me and speak to her rather than me because they think I won’t understand. Because CP impacts my speech and I can’t talk as fast as others, people assume I can’t think fast, either. They think because I am low mobility, I must be low IQ. Someone without a disability can pursue a competitive job or train for a sporting event and be praised for their ambition. But when I try to advocate for myself and be assertive, people think I’m asking for the moon and stars. I just want the same respect and dignity as everyone else.
  • We can’t have jobs: Just like when I was in elementary school, there are people who think those of us with physical disabilities aren’t worthy of jobs because we’re taking space away from non-disabled people. But just like everyone else, we have career ambitions. We can be actors (RJ Mitte from Breaking Bad, Jerry Jewell from Facts of Life), comedians (Josh Blue), models (Isabella Neville), Navy Seals (John Quinn) or everyday bus drivers, receptionists, and cashiers. Because CP is so different for each person who has it, we are able to lean into our own strengths. One person with CP may have vocal issues while another can sing. One can use a walker and another can run marathons. We’re members of your community, but only because we’re asserting our right to be there.
  • We can’t be independent: The stereotype for people with a disability like CP is that we need someone by our side 27/4, but there are many different levels of independence. Even if we do live with someone, we can still be independent and help ourselves by doing basic tasks like getting dressed or using a bathroom. If we need help doing basic tasks, we can still lessen the workload on our helpers by doing as much as we’re able to. For example, moving from the wheelchair to the bed, or getting partially undressed without help. If a home is accessible, we can cook and do some of the cleaning and bathing ourselves. Many of us live by ourselves, and have PCAs who come in and help us with some tasks to help make our lives easier. Even a non-disabled person will sometimes need help, for example by getting groceries delivered or needing help with babysitting. So we aren’t so different after all.
  • We can’t self-advocate: The more we can speak up for ourselves, the more people will understand our disabilities. Speaking up for ourselves brings more education to the community. Being able to self-advocate is something that everyone will have to do eventually, whether they’re disabled or not. I’ve found that taking workshops to bolster my self-esteem and working with a speech therapist have made me more confident, which leads to more assertiveness.

Below is a scenario I’ve written to show how someone can be more assertive, gaining what they need while still maintaining a positive interaction:

Josephine is a student and Mrs. Toni is her aide. Josephine is having a conversation with Mrs. Toni, who would like Josephine to pick up her pen from the floor, go to the front of the class, and put it in the pen jar. Lastly, Mrs. Toni would like Josephine to pack her bookbag because it is ten minutes before the bell rings. Here’s how it goes:

Josephine: Mrs.Toni, can you please pick up my pen?

Mrs.Toni: I can, but why don’t you try?

Josephine is starting to get annoyed. Because she just doesn’t want to do it. Josephine has CP, and even though she can do things for herself, she knows Mrs. Toni can do it faster, and nobody will stare if Mrs. Toni does it.

Josephine: I can’t.

Mrs. Toni: Josephine, I’m here to help you, but I’m not here to do it for you.

Josephine is just getting more upset because she knows she can’t do everything. Picking up the pen is possible, but will take longer than it would for someone like Mrs. Toni. Plus, her classmates might stare at her.

Mrs. Toni: (sternly) You can do it.

Josephine: (Huffs angrily). Fine. I’ll do it.

Josephine picks up the pen, and wobbles like she’s going to fall off the chair. Mrs. Toni helps to keep her steady. With help, Josephine is able to pick up the pen and return it.

Mrs. Toni: See, you could do it. I only had to help you a little. Now, pack up your things.

Josephine packs her bag and the bell rings, and they go to the next class.

Despite your disabilities, there’s always a way to modify the situation to make it possible. Sometimes you need help with every step, and sometimes you only need someone to hold you steady while you do it for yourself. Sometimes, you just need someone cheering from the sidelines with positive affirmations. With assertiveness, you can assess what you need and know how to ask for it.

There will always be people who accuse you of asking for the moon and stars, but it’s better to focus on the ones who take you in good faith and help you. Asking for what you need is always better than being “polite.”