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.”

Disability

EVERYDAY

OUR BEAUTIFUL CHALLENGES

Every day they spend together is a day they Cherish

Cherishing the time they spent together was all they wanted 

They remember the days when they wasted time not spending time 

Time was the one thing they couldn’t get back

If time could only go backward, they would have more time to cherish each other.

Every day is a beautiful journey together. 

The beautiful journey starts by waking up in each other’s arms

Every day is beautiful, and the times they cherish with each other bring smiles to them that they always have waited for.

Their smiles would light up the night

The night was packed with their love for each other 

Every day they spend together is a day they Cherish

Cherishing the time they spent together was all they wanted 

They remember the days when they wasted time not spending time 

Time was the one thing they couldn’t get back

If time could only go backward, they would have more time to cherish each other.

Every day, there is a new chapter in their story.

Their story started long before they became one.

When their eyes met for the first time, they knew.

Their hearts felt the connection before they knew what was happening.

The connection just kept getting stronger.

Every day they spend together is a day they Cherish

Cherishing the time they spent together was all they wanted 

They remember the days when they wasted time not spending time 

Time was the one thing they couldn’t get back

If time could only go backward, they would have more time to cherish each other.

AWARENESS, CEREBRAL PALSY, CHALLRNGES, DISABILIATIES, Disability, EMPOWER, HEALTH, LIVING MY BEST LIFE, PHYSICAL DISABITY, SELF-AWEARNESS

FORGIVENESS

OUR BEAUTIFUL CHALLENGES

Everyone says I have a fantastic story to share about life. When people say I say it’s just what I was given, I had to make the best of the life I was given. However, I want to tell my story, but I have a lot more to learn about life and about myself. During the Pandemic, I started the journey because I was forced to be locked in my apartment. I moved out of my family’s home for the first time and it was six months into a 4-year Pandemic. I could only visit with a small pod of people for the first year and a half, leaving plenty of time for me to become best friends with my computer.

My computer became the best friend I needed, and it didn’t judge me. I would sit at the computer most of the day and write what was on my mind and in my heart. Some of the stuff I would write about was hard to face, while others were fun to remember. The writing was therapeutic for me. I learned to talk about my challenges, even if I was just just talking to my computer.

While talking to the computer, I was able to put different parts of my life into perspective. I saw that being afraid of who I was hindering myself from reaching my full potential. 

A lot of people would expect my life to get harder during the pandemic with such limited help, but instead, it opened me up in many ways, even though I was shut inside. Even though the Pandemic made my challenges even more difficult, it didn’t make them any less beautiful.

Challenges can be beautiful in many ways. It can be hard to see how beautiful challenges can be if you are the one with said challenges. For example, I was living on my own for the first time, and I was managing my own place by myself. Even though I had limited help, I had unlimited creativity. I was able to make my apartment my own style. I could plan my own meals and cook them in my own pots and pans, and do my own laundry. It was challenging, but I grew to love who I was and what I could become.

For the first time in my life, I was able to fall in love the right way by getting closer with a good friend of mine. I used my computer for this, too. This is just one of many ways my computer helped me. I was able to use it to travel all around the world. I got to know what the pandemic was like in different countries.

The challenge of the pandemic was made beautiful by giving me a new way to explore the world online. My world became so much more than I ever thought I could have. While learning about my beautiful challenges during the pandemic, I also saw how to forgive myself. Even though I never showed it, I held it in my mind that my disability would stop me from having the life that I wanted.

During this whole journey, I learned that whether you are born with a disability or acquire one in life, challenges are beautiful. Once I saw myself, I took a turn in life, making me accept who I was. I know how difficult it could be looking past our negativity, but there comes a time when we must look beyond what we see in ourselves, and what other people see in us. Every obstacle we overcome has a purpose and a meaning.

When overcoming a struggle, I don’t see it as anything significant. I just see it as part of life. Whether you were born with a disability or acquired one in life, believe it or not, our challenges are beautiful. It took me a long time to see that in myself. Once I saw that in myself, I took a turn in life, making me accept who I am. I know how difficult it can be to look past our negativity, but there comes a time when we have to start looking beyond what we see in ourselves and what people see in us. Every obstacle we overcome has a purpose and meaning. When overcoming a struggle, I don’t see it as anything significant; I just see it as a part of life. As a kid, I used to fall, then just get up and move on like nothing happened. People used to ask me how I could do that; I would just say it’s a part of life. It’s not that I don’t see my challenges or seek help for them; I just try not to let them get to me. If I try not to let my difficulties get to me, then when people meet and get to know me, they don’t see my disability. They see the person I am, and isn’t that what you want people to see in the long run?

Challenge means: A call to participate in a contest or a competition, especially a duel. When I look at this definition, I think about what I was like in the past. I thought I was competing with my peers.  I realized I wasn’t competing with my peers. I was competing with my disability. By competing with myself, I lost more time than if I just went with the flow and my challenges.  Yet, I would not change a thing.  Whether they were the challenges I was born with or the challenges I added to life, they made me who I am.  

Results may vary based on the life you’re living. Your challenges won’t be identical to mine, but there are ways to make them beautiful. I invite you to look at ways to broaden your horizon even if you don’t or can’t leave the comfort of your own home.

AWARENESS, CEREBRAL PALSY, CHALLRNGES, DISABILIATIES, Disability, EMPOWER, HEALTH, MENTOR

THE BEAUTY BETWEEN OUR CHALLENGS

OUR BEAUTIFUL CHALLENGES

WELCOME TO “OUR BEAUTIFUL CHALLENGES.” WHETHER WE HAVE OUR DISABILITY FROM BIRTH OR ACQUIRED IN LIFE, THERE IS BEAUTY IN OUR CHALLENGES. WE HAVE TO FIND THEM WITHIN OURSELVES 

Whether you were born with a disability or acquired one in life, believe it or not, our challenges are beautiful. It took me a long time to see that in myself. Once I saw that in myself, I took a turn in life, making me accept who I am. I know how difficult it can be to look past our negativity, but there comes a time when we must start looking beyond what we see in ourselves and what people see in us. Every obstacle we overcome has a purpose and meaning. When overcoming a struggle, I don’t see it as anything significant; I just see it as a part of life. As a kid, I used to fall, just get up and move on like nothing happened. People used to ask me how I could do that; I would just say it’s a part of life. It’s not that I don’t see my challenges or seek help for them; I just try not to let them get to me. If I try not to let my difficulties get to me, then when people meet and get to know me, they don’t see my disability. They see the person I am, and isn’t that what you want people to see in the long run?

Challenges mean -A call to participate in a contest or a competition, especially a duel. When I look at this definition, I think about what I was like in the past. I thought I was competing with my peers.  I realized I wasn’t competing with my peers. I was competing with my disability. By competing with myself, I lost more time than if I just went with the flow and my challenges.  Yet, I would not change a thing.  Whether they were the challenges I was born with or the challenges I added to life, they made me who I am. 

Disability

WHAT IS INTERAL ABLEISM?

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.