Don’t limit me because of my disability

By Michelle Steiner

Photo by Marina Solis on Pexels.com

One of the most challenging parts of having a disability often isn’t the disability, but the limitations that other people place on me. When many people hear the term Learning Disability, they think that I can’t learn or be successful. The term may be confusing and indicate a person incapable of learning and begin to put limits on my potential. It seems like from the beginning people have put limits on what I could do.

When I was in school people thought that I would be limited educational choices in the future because of my difficulties with my disability. I always knew that I wanted to go to college work with kids, and be a writer. I can remember telling someone as a child that I wanted to go to college and I was told that college was for people who liked school. What many people didn’t understand was that I liked to learn. I didn’t like the frustration that came with not being able to perform in math. I also didn’t enjoy the bullying my peers inflicted on me.

When I got to college, professionals would try to put limits on me as well. I had a Physiatrist who told me that I most likely wouldn’t go beyond a community college. I also remember one who told me that my job choices would be slim because of my math difficulties. I knew that some programs weren’t worth, perusing because of my disability, but it terrified me that I wouldn’t be able to the degree or the job that I wanted.

I also experienced limitations in the workplace. I can remember getting connected with a social service agency that helped people with disabilities to get jobs and provided job coaching. Most of the assistance was little to help to me. I remember having one appointment, where I circled jobs in the newspaper, that interested me. I recall thinking I can do this at home. When I would tell them that I got a job interview, they asked if they could do with me for support. I declined on that and went on my own. I was able to find employment on my own as a substitute worker in daycares and schools. I found it difficult to make it to appointments because I was often working, during those times. Most of the people that the agency served were people who had Intellectual Disabilities and had more service industry jobs. The services they provided were more of a frustration than a help and I never found employment through them.

Other people have tried to limit me with job choices as well. I have been advised to seek work in fast food or stocking shelves because it is considered easy work. This type of employment may seem easy, but would present challenges for me that the average person may not experience. I would struggle with trying to take orders, and prepare food. I also wouldn’t be able to run the cash register because of my math disability. I also don’t think that I could move at a quick enough pace to be able to stock shelves. I’ve know people with disabilities who were trained to do this and were let go because they moved too slow. Most importantly I wouldn’t have the heart or the desire to do these jobs. I knew they wouldn’t be the right fit, but because of my disability people automatically assumed that is the only kind of position I could handle.

People try to box people into neat little boxes based on their abilities. Nicely wrapped packages are great for shipping products. A person places an order and they are delivered to them. In reality, placing people with disabilities in boxes doesn’t work as well. Individuals with them are people, not products. Each person with a disability will experience it differently, even if they have the same type. We don’t expect people without disabilities to fall into neat categories but understand that each person has different strengths and weaknesses. Yet when someone has a disability, we expect them to all be the same. When the person with one doesn’t fall into the neat box they are often shamed. People often try to cure them or put them in yet another box.

Having a disability does come with limitations. I have had to carefully make choices regarding what I struggle with. I have may have things that I struggle with but there are also many things I’m good at. It’s often not that I can’t do something, I simply haven’t found a way to do it. It may take me a while, but I will find a way to do it. Expecting me to fit in a box or placing limits on what I can’t do isn’t helpful. I’m well aware of what is hard for me and putting extra restrictions discourages me. When people limit me solely on my abilities it also squelches my dreams. When people support and gently encourage me to find a different way I feel empowered to try again and break through limitations on my terms.

How Accommodations aren’t cheating but are valuable tools

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One of the biggest misconceptions about disability accommodations is that they are an unfair advantage. Many people view them as cheating or taking the easy way out. Individuals with disabilities who use such valuable commodities are considered to be using their disability as a crutch or enabling the person, not to work to their full potential. What so many people fail to realize is that these services are ways for people with disabilities to be able to learn, live, and participate in society. November is assistive technology month. During this month we highlight adaptive equipment that people with disabilities can choose. Some of these include speech-to-text, screen readers, IPADS, and reading pens. Using these types of technology and other accommodations can help a person with a disability to succeed. However, due to the negative thoughts that surround them, many people with disabilities are hesitant to use these services. When a person chooses not to use these accommodations, it makes life frustrating and difficult.

I can remember not wanting to use disability accommodations because of the stigma that they created. From Elementary School to College, I have heard my peers say that it wasn’t fair that I got extended test time or had the test read aloud to me. Many of my peers thought that I was getting the answers given to me. What they didn’t realize is that no one gave me the answers or hints. Hearing the test read aloud, helped my brain to be able to process what was being asked on an exam. Taking the test in a separate room also helped me to have the extra time to be able to go through each question and not feel like I was being rushed. Plus I didn’t have to hold the rest of the class up while I tried to finish it.

I also had peers who thought that it wasn’t fair that I made the honor roll in academic and learning support classes. I can remember another student asking what I was really learning in those classes. She suggested that I take Advanced Placement Biology. Science and Math were always subjects that gave me a lot of problems. I needed to have a learning support class that was tailored to my individual needs, not the goals of the class or grade level. To be in a regular ed science, I needed to have accommodations and supports in place for learning. In regular education, I was expected to learn what my peers did in my class. It was hard at times, but I could perform well with the proper support.

When I got note taker in college, I recall people who thought that it was unfair. They said that someday I would have to take notes .Others thought that it was a skill that should be taught and not have others write things down for me. Many people didn’t realize that I was still writing down information, but having someone else take notes, was helpful in case I missed something. It was also hard for me to focus on the lecture and write down the information in class. Not all professors put information on the board to copy. Some would knock on the table if it was important. My notes were often identical to the note-taker’s . Another advantage of having aa notetaker, was that my handwriting is poor. Many times when I would have someone quiz me on information, they couldn’t read it .I also couldn’t decipher what I wrote, which made studying more difficult. Having a note-taker made it easier to review and read my notes. I tried recording the lecture, but found it was more effective to study a few minutes of notes each day rather than listen to an hour-long class. Another helpful tool was having a copy off the power point to review.

Calculator usage was another way that people thought I was cheating. I can remember a professor who said they used their minds not calculators in class. I can remember being upset when I heard this, but because of my disability, I was allowed to use one on tests and homework. I didn’t use it in class because my peers wouldn’t have understood. A calculator did little to help me with my math. Having a severe form of Dyscalculia, I don’t understand how numbers work. I can remember being frustrated when I put the numbers in the calculator but got the wrong answer. You still need to know the steps and how to correctly solve the problem.

Another piece of technology I use is a digital watch. The math portion of my disability, also makes reading an analog clock impossible. I cringe when I hear someone say that a person who doesn’t know how to do this is lazy and that digital clocks make people lazy. Despite many hours of education and attempts I simply can’t do this. A tutoring session isn’t going to help me. What is effective is looking at my Fit Bit or other digital clock to tell what time it is.

I’m also unable to use a manual can opener. A seemingly simple piece of equipment is like rocket science. I can try to use it but the can won’t get opened. When I would tell people that I can’t do it, they would look at me like I was an alien. Instead, I use an electric can opener. When I use an electric one I’m able to open cans by myself.

Assistive technology doesn’t cure the disability or give an unfair advantage to the person. Using accommodations or devices helps to level the playing field. It may not be appropriate only when someone is testing to get a baseline on what someone knows. Unlike regular tests, standardized tests and evaluations don’t have accommodations. When they were testing me for a Learning Disability I wasn’t allowed a calculator or a computer. The evaluator needed to see what I knew. I never walked out of an evaluation with someone declaring I didn’t have difficulties with learning. After they got how I performed without these services, I was also given a list of things that would help me learn. Having this has helped to guide me in knowing what services I need.

One of the greatest lessons I had to learn was to use the accommodations. Using these services wasn’t cheating, but providing me with the essentials I needed for success. I also had to learn to shut out the voices who were telling me otherwise. Very few of them knew what it was truly like for me. Hearing those remarks also did nothing to help me. What was helpful for me was using the accommodations. When I utilized them I had a much easier time. My grades improved and life didn’t seem as hopeless or frustrating. November may be one month devoted to highlighting assistive technology, but for a person with a disability, it’s something they face daily. Throughout the rest of my life, I will have to find new ways to do things and not listen to the voices that say accommodations are cheating.

How I really can’t do every thing I put my mind to.

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One of the most frustrating parts of having a disability is when people think that I can do anything. When I have vented to others of the struggles of having one, people would often used motivational quotes such as “you can do anything you put your mind to or to shoot for the moon, if you miss you’ll land among the stars.” One of the most frustrating ones had to be You can do whatever you put your mind to. When I would hear this I would think that this would be the time that I would master math, learn how to drive and be able to do all the things I wanted to do. I would put forth the time and the effort, and would be disappointed when I made little to no progress. People would tell me to try harder or that I could perform better. The pressure to perform to other people standards, made me feel ashamed of my disability and even more frustrated on the limitations it had on me. It wasn’t until I accepted that I couldn’t do all things, that I began to accept my Learning Disability.

The idea that everyone is good at everything, isn’t a reality for anyone. Each person has different strengths and weaknesses. What may be easy for one person, may be difficult for others. Most people also tend to not invest time in something that is difficult or frustrating for them. I don’t enjoy activities that require math. You won’t find me doing SUDOKU puzzles in my free time, but I love unscrambling words. I also tend to not participate in team sports, due to my lack of eye hand coordination, but I like group exercise fitness. My limited hand dexterity makes knitting, and folding crafts difficult, but I love to paint. I’m sure that if I did these things, I may improve, but most likely it would be short lived and wouldn’t live up to the expectations others would have for me. Most importantly I would spend time feeling frustrated and in adequate. Avoiding activities that are stressful helps me to enjoy my spare time. I have also had to do this in other parts of my daily life. I can’t avoid math completely, but I can limit it and find ways to deal with it. If I go out to eat I can use a tip calculator to help show me the tip that I need to give.

Many people also think that a person with a disability has super human powers, fueled by their disability. The media loves to present characters that have savant like abilities, or stories of people with disabilities that can do all things. People see those narratives and expect a person with a disability to perform to unrealistic standard. I doubt that most people without disabilities would like to be help to such unattainable standards of holding super powers.

Another unhelpful narrative is comparing what people with disabilities can and can’t do. I can remember being compared to other people who could drive or do math well with a disability. The narrative was if they could do so could I. In reality driving and math are the big areas of my life that are a struggle. Hearing others say this caused more frustration and wasn’t helpful to my situation. Each person with a disability, will experience it differently even if they have the same one. I’m glad that the person with a disability has the ability to do something well, but it’s not helpful to place that pressure on another person.

When someone with a disability doesn’t perform to the expectations of others, they are often shamed. People will view them as lazy or unmotivated. Others will say if they really want to do it they could or they are told to try harder. In reality the person with a disability may be indeed doing the best that they can. The issue is not the disability, but the society that is created that everyone can do what they put their mind to.

Admitting that there are things that I can’t do has kept me humble. I used to feel less than because I couldn’t read the face of a clock or understand how numbers worked. I focused on what I couldn’t do that I almost lost focused on what I was good at such as reading and writing. Sharing my vulnerabilities, also helped others to share with things that they struggle with. All of us have some type of thing that is hard for us. Some people may have disabilities, others may have addictions or traumas that have happened to them at some point in their lives. Many people show it and others are good at hiding their issues.

I also had to learn who to trust with my story. When many people hear that I struggle with certain things because of my disability they want to cure me. People will tell me if I just got my act together or prayed harder I wouldn’t have a disability. I can remember telling a person from church about how I was struggling and her response was “Well didn’t you pray about it?” I did pray about it but God had other ideas for how my life was to go. Thankfully his plan was far better than the one that I had in mind.

In my life there will be some things that I cannot do, no matter how hard I try. There will be limitations because of my disability and will have to use creative problem solving to compensate. . My personal best may not be good enough for the world and people will try to perfect me. I have made my peace with the things that I’m unable to do. I may not be able to do every thing that I put my mind to, but there are many things that I can do. I need to focus on what I can do and find creative ways to do the things that are difficult.

Living life like a camera with a disability

“Life is like a camera. Focus on what is important. Capture the good times. Develop from the negatives and if things don’t work out take another shot.”

The English Student 2015

One of my newfound hobbies is photography. I love to take pictures of flowers on my many walks. I also love to take photos of the interesting places that my husband and I visit. Another major part of my life has been having a Learning Disability. Having one has been a way of life for me as I was diagnosed as a young child. Looking back on having one I can see many pictures. My disability hasn’t changed, but how I view it has. The quote life is like a camera from the English Student was something that I could relate to how I saw life with a disability. The quote is “Life is like a camera. Focus on what is important. Capture the good times. Develop from the negatives and if things don’t work out take another shot”.

Focus on what is important has been key for me to be successful. For so many years I worried about being accepted with my disability. I wanted to hide it like it was a shameful secret. Being bullied and rejected by my peers didn’t help me to feel proud of it. I wasted so much of my time wanting to be a part of the in crowd, that I almost lost being myself. I also was too concerned about what other people thought about me getting disability services and accommodations. Many of my peers thought that using those services was cheating, or giving me an unfair advantage. When I didn’t use a note taker or extended test time my grades suffered. I had to put my effort into what worked for me. I also needed to focus on what was good in my life. For many years I was sad about what I couldn’t do and the limits that my disability placed on my life. I didn’t see the things I could do well such as reading or writing. I felt like a failure because I couldn’t get math no matter how hard I tried. When I keep the focus on what I can do it makes me feel happier and satisfied. I also feel more empowered to look for other ways to do things such as driving, that aren’t possible with my disability.

Capturing the good times has also helped me with having one. At times it can be frustrating, when events are not going the way that I want them to be. Looking back I was frustrated when I couldn’t learn or was rejected. I have those photos of despair burned in my mind, but when I go through more photos I can also see good times as well. I can see a loving family who helped me with my disability. I can see my imagination developing, to compensate for not having peer interaction. I can remember when we first moved into my childhood home, making toast out of cardboard to put in my play toaster. Having the ability to entertain myself has helped me find activities that I enjoy doing as an adult. I also can see that as I grew I had more control over creating the scene that I wanted in the picture. I got to associate with more people I wanted to be with and to go out and achieve the dreams I wanted.

Developing from the negatives was also important for me in dealing with having a disability. I had to learn that there were going to be things in my life that I simply couldn’t change. Some of what I thought were my greatest disappointments turned into my greatest blessings. A negative in a dark room doesn’t start out as a picture, it has to endure many changes. The picture appears like a blurry blot that slowly begins to take shape. I can now see that having one has helped me to develop empathy for the students that I work with. I’m also able to think outside of the box, when there is a problem. I encounter situations every day, where I need to be a problem solver. Having a disability doesn’t always give me a default option, I have to think of initiative ways to do many things.

The most important lesson has been when things don’t work out to take another shot. I have failed at many things in my life. I experienced failure early on in my life. I had to redo Kindergarten and always had that fear in the back of my head. I have failed many tests and classes. I chose not to let the failure stop me from doing what I wanted. I had to get back up and try again many times using different strategies. I wanted to give up, but I found a different way.

Looking through the pictures’ of my life I wouldn’t trade my disability i for anything. At times it would be more convenient for me not to have one, but I would miss out on so much beauty. Having one has made me to center on what was important and let the less important stuff fade in the background. I had to capture the positive things, that I almost missed. I also had to learn to turn my negatives into positives. The most important thing was not giving up, and attempting to take another shot after a set back. Having a disability will always be in the picture of my life, but it’s a beautiful one that I’m proud to display.

How I can’t shut off my Learning Disability

Photo by Mikhail Nilov on Pexels.com

  Recently my husband and I went to an Asian Lantern Festival at our local zoo. We got our tickets scanned our tickets and made our way to the event. The only choices we saw for entering were an escalator or an elevator. I’m unable to use an escalator because of my visual perception issues, so I need to use the elevator. The line for the elevator was long and wasn’t moving. Someone in the front said one of the elevators wasn’t working. You would press the button; the doors would open but it wouldn’t go up. I nervously scanned the escalator praying one of them was broken, so I could walk up it. Much to my dismay it wasn’t but thankfully someone went on the escalator and pressed the up button and we were able to use the other elevator.  How I wished in that moment I could turn the off button on having a disability. One of the hardest parts of having one is that there is no on and off switch for it. It’s constantly on and can create difficulties in my life.

I wish that I could find the off switch when I need to get somewhere. I’m unable to drive due to my reaction time and visual perception. I’m lucky to have people to give me rides and live in a central location where I can walk where I need go. It takes more planning and doesn’t allow me the opportunity to take spontaneous adventures. I have also had to turn down good jobs, because I couldn’t get there or they required a drivers license.

It would also be nice to turn off my disability when it involves math. I have trouble with understanding how numbers work and calculating them. I have had to carefully research educational programs and jobs that interested me but had the least amount of math possible. I can remember struggling to get through my high school math classes. Any time I encounter numbers it’s going to be a challenge for me. Having a math disability goes beyond just being poor at math. It also effects my ability to understand directions, or read the face of a clock. How I wish I could turn it off to be able to perform those tasks.

I also wish to flip the switch of my disability when I struggle with my body awareness. When I’m in public I often bump into people and block entrances. I struggle to coordinate my body when I play completive sports. I also blink whenever a ball comes in my line of vision. When I was growing up it was more difficult for me. High school gym class was a nightmare and I was often bullied. I have found noncompetitive physical activities such as aerobics, weights, and walking that I enjoy doing. Having a curved spine and feet that turn inward when I walk also don’t help me move with grace. I wish that I could turn that switch off, because people often stare and wonder what is wrong with me.  

It would also be nice to turn off the button of having bad handwriting. I have always struggled with writing neatly. I can remember getting a ‘W’ indicating weakness of my report card in grade school. I can also remember people judging me on my handwriting. I have had people tell me that my handwriting was interesting, or tell me that I had the handwriting of a serial killer. I’ve also had people tell me that it was messy and surely my room looked that way. I also had someone tell me that if I wanted to be a writer then I would have to be neat. After learning to type, I was finally able to have people understand what I was saying.

There are many times I long to be able to turn off the button of having a disability. At times it is like a child’s loud toy you can’t turn off. I can’t change the disability, and I have to work with it despite the blaring noise. Other times it is people’s reactions and expectations of me. People have often thought if I just worked hard enough, prayed harder, or got my act together, then I would be able to overcome it. I also had people who tried to cure me with basic adult education programs and telling me to just think positively.

None of these activities helped me to switch the button off. What has helped me is accepting that I can’t shut the button off when it creates difficulty for me. I have also had to use creative problem solving to teach myself new ways to do many things. To my surprise I have found that I can find different solutions to a problem.

It may not be the way that is always easy or how I intended it to go. I may also get there slower than I wanted and that can be frustrating as well. I will also encounter people who won’t understand why I can’t turn it off. I won’t be able to meet their expectations. I simply need to block out the noise and move forward to find a way to do what I need to do. A solution is always out there, I just need to find it.

Making the broken pieces beautiful

Photo by rotekirsche 20 on Pexel

Having a disability has caused me to deal with brokenness. When I was first diagnosed with a Learning Disability I felt like I was given a box of broken glass. The glass was beautiful with a rainbow of colors. The pieces also came in a variety of shapes and sizes. I was lucky to have supportive parents and help at school. Despite the supports I received, I had to figure out how to place each broken piece together. Facing brokenness at young age wasn’t easy, often the glass would pierce my tender skin causing me to bleed. Other times the glass of my dreams was shattered into even smaller pieces. Looking at each piece of broken glass has lead to acceptance and healing.

One of the biggest pieces that I had to deal with was that my brain wasn’t wired like a neurotypical person. In order to learn, work, and complete other tasks I have to find different ways to do things. When I was a young child, I simply wanted to be like everyone else. I didn’t understand why I couldn’t learn like my peers could. I felt jealous of the ones who didn’t seem like they had broken pieces. The pieces of glass they did have seemed to be smooth and clear. Little did I know that many of them had broken areas in their lives as well. Some of them were able to disguise it easier.

Along with accepting my brain had a neurodiversity, I had to also accept there wasn’t many hard set rules on how to lay the pieces. I was given general strategies, accommodations, and a service plan to compensate for my difficulties. I wasn’t given a manual that would have all the answers to the many different challenges that I would face. I wasn’t given a set of rules or a sheet of directions. People could guide me, and I had many people give their opinions. It was up to me to set the broken pieces where I thought they should belong, and often had to teach myself how to put them into place.

Learning where to put the pieces wasn’t always easy. Sometimes I would make a plan and it wouldn’t work out how I expected. There were also times when the plan we were following was working, only to have it not work. Regression often happened more in math than any other subject. I can remember having a teacher who’s goal was to have the learning support students on grade level with the regular ed students in math. She commuted with a math teacher who said that we only did easy work, and she wanted to prove her wrong. For a time it worked and I was able to complete simple equations. I can remember the day that things began to regress. We had a student teacher, in our class and she was getting evaluated by her professor. I began to be able to work the math problem. Everyone thought I was simply nervous, and proceeded forward. I tried to explain I wasn’t nervous and knew the professor was observing her student not me. The learning support teacher never evaluated where I needed the clarification. She proudly announced that we were on the same level as the regular ed students in math. I wasn’t on grade level and was falling behind. The teacher also told us that learning support math was not offered at the next level and had me sign up for a basic math class. I had anxiety all summer on how I was going to handle a math course. I struggled in the class and the regular ed teacher didn’t know what to do with me. I found out there was learning support math. How I wished she would have told me the truth, it would have saved so much aggravation.

As I got older I had an easier time putting the pieces together. I realized that having an all or nothing approach didn’t serve me. I could make a mistake or struggle to learn something, without having to break every piece apart and begin again. I could appreciate the small imperfections that gave it character.

I also had to learn that how I designed my glass, would not always be understood or accepted by everyone. I have had people who didn’t think that accommodations or service programs for people with disabilities were fair. Many people could only see what was broke, that they missed the beauty. I’ve been told there were so many things that I couldn’t accomplish. Other people would try to cure my disability, rather than celebrate it. Once I became successful, many people couldn’t see the pieces, but the product.

To my surprise what I once thought was broken, became beautiful. I created the design I wanted. On good days I could even see prisms of color that went through the glass.

Truly it didn’t matter what other people thought of me. I had to do my best to place the broken pieces together, and learn what works best for me. I didn’t ask for the pieces I was given or to have a disability. I can only try to work with what I was given. I can create beauty from what was once broken.

Creating a space where the person with a disability can bloom and thrive.

WHEN A FLOWER DOESN’T BLOOM, YOU FIX THE ENVIRONMENT, NOT THE FLOWER. Alexander Den Heijer

One of my favorite passions is gardening. I love to nurture and grow flowers and plants. I had ones that have grown with ease and marveled in their beauty. I also had others that have not grown as easily and required extra tender loving care. When a flower doesn’t bloom people don’t try to fix the flower, but the reasons that it’s not thriving. People may try giving it more sun, or more shade. Other interventions could be changing the amount of watering or a different types of soil. Each of these changes the environment the flower is growing in, but not the flower itself. Having a disability, I have often failed to bloom the way most people expected. Most people try to find ways to fix me, but not the culture that I live in.

Having the diagnosis of a Learning Disability is frequently not the problem. I have gone through the process of acceppting my disability and have learned ways to live in a world not made for me. The issue often is that other people aren’t as accepting of my disabilty and thinking the answer to my difficulites is to cure it. When I tell people that I struggle with math they offer basic math education courses. What most people don’t understand is most of the information that they cover, will be of little benefit. I have tried unsuccessfully for years tried to understand math and only have a limited understanding of it. Many people also say “But it’s so easy!” or “The answer is right in front of you!” Math may be easy for a person who is good at it and many of them can see the obvious answer. For a person with a math disability, it’s simply not easy and can’t see the answer.

Most people wouldn’t tell a person in a wheelchair to walk up the steps. Few people would judge them for not being able to use the stairs or think of them as lazy. Most people would understand that they couldn’t use the stairs because of a physcial disability. They would look for ways to change the enviroment with accomoations such as an elevator, but not change the person. The Americans with Disabilites Act mandated that people with disabilies receive accommodations, and that community places needed to be handicaped accesible.

Sadly the same understanding given to a person with a physical disability, is often not given to people who have hidden ones. Just because you can’t see my disability doesn’t mean that it doesn’t exist or doesn’t give me difficulties. I may not fit a mold of what a disability is, but each person with one is different.

Even when accommodations are used to help a person with one, the goal is not to cure it, but how to manage it. Strategies such as extended test time and having the test read aloud, help to process information better, but it doesn’t get rid of it. Having explicit clear instructions can help me perform well at my job, but doesn’t cure my executive functionating issues. Typing stories and reports makes other people understand my thoughts, but doesn’t make my handwriting neater. Graduating high school didn’t cure it and neither did a college degree.

When people try to cure rather than accept it quickly turns to Ableism. Ableism is discrimination of a person based on their disability and favors a person without one. Having a disability isn’t shameful or something that needs to be changed. At times having one creates challenges and would be more convenient not to have one. Most of these difficulties require creative problem solving, that change the environment not the person itself.

Whether people accept my disability or not I will find a way to bloom. My bloom of accomplishments may not look like everyone else’s and that’s okay. Other people may flourish more and be what the world considers to be brighter. Others may look at my blooms and not see a flower but weeds. I will tend to the environmental factors that I do have control over and focus on what I can do. I may not be good with numbers but I’m better with words. I may not be able to drive, but I can walk or get a ride to where I need to go. None of these solutions, will cure my disability but can help to create an environment for me to grow and thrive. One day I dream of a world that works to accept and embrace all people despite their differences. Until that day comes all I can do is focus on what works for me and help to create a world that works together to change the environment not the person.

The ever changing sky of disability

Photography by Michelle Steiner

One constant in every day life is the sky. You can be sure when you look upwards, there is a sky. It may look different depending on weather conditions, time of day, and other factors. It’s always there. Another constant in my life is having a Learning Disability. I have always had one, but similar to the sky, my view on having one has changed. What I once viewed as one way is constantly evolving.

My first view of the sky of disability was in the deep black of night. I struggled with learning and socializing with my peers. All I could see was darkness and frustration. No matter how hard I tried, I just couldn’t succeed. Slowly the strategies the school implemented began and the hard work began to pay off. I found things that I was good at. I saw a twinkle of light from the moon and stars shining in the sky. I made many wishes on the stars. Some of them came true much later, and others weren’t granted. I was told to shoot for the moon, but felt discouraged. Despite my successes, I still lacked confidence. I also began to see fireflies dancing through the sky. I chased them during many dark nights in summer. Often times the fireflies would flutter away. I used to try to keep the ones I caught in carboard milk cartons with holes poked on top. Sadly I was unable to keep them alive much like many of my dreams. I thought the night would last forever. Just when I thought it would never end, the darkness began to dissipate and the sky began to get brighter.

The morning sky burst forward with streaks of orange. The golden sun began to slowly rise, warming me. I was put into all regular classes except for math and resource room. I was thriving and made honor roll. I still had to work hard and receive supports, but it was working! I was concerned about my life after I graduated. I was doing so good with all of the support and wondered if I could handle college. Many people wondered how far I would be able to go with my disability. With the doubts lingering in the air, the sky began to change again.

The sun settled in the sky and the light began to fade. New streaks of pink and orange filled the sky. I wanted to hold onto the beauty, before the night came. I knew that new challenges, of the real world were going to be difficult. There are fewer programs for people with disabilities after high school. So many people struggle in college, work and other areas of the community. Learning to find the right strategies can be challenging. Watching the beauty in the sky gave me hope that it would get better and would return to better days.

It between the drastic changes, the sky also went through more subtle changes. Some days brought clouds and rain. Other days brought the bright golden sun. When there was rain and sun it created a rainbow. Other days brought freezing cold snow and sleet. On certain days the sky was blue and other days it was gray. What often started out looking like one type of a day, often turned into another day quickly. Subtlety through time my attitude shifted on having a disability. I began to see more of the sun and less of the shade. I even began to see more rainbows as I saw that I could turn what I thought was the most awful thing into something beautiful. I still felt the cold whip through me and felt like I was drowning in the rain. What I learned how to do was handle each type of condition that the sky presented. If it rained I needed an umbrella and a rain coat. If it was snowing boots, and warm clothing. Warmer days meant that I could have a light jacket or none when as it got hotter.

Often times the sky presents new challenges in different situations. I have to look for alternative ways to combat these obstacles. Having one can cause me to feel discouraged and to think of what I’m missing out on. But now I know that when I look at the sky, it won’t stay that way for long. Brighter skies are ahead, and even the stormiest sky doesn’t stay dark forever. How I wish I could have seen this when I was younger. Most importantly it’s not what the sky is doing. What counts is is my response to it. I have had to learn to adapt, survive, and cope under the ever changing sky of having a disability.

What is executive functioning?

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What is Executive Functioning?

One of the most frustrating and most misunderstood part of having a Learning Disability is executive functioning. Executive functioning is the management department of the brain. The tasks involved with this helps us to set goals, plan and complete duties. People who have neurodiverse brains that are wired differently often struggle with executive functioning . When someone struggles with this it can affect them at work, home or at school. The three main areas of executive functioning are working memory, cognitive flexibility, and Inhibitory control .

My difficulties with working memory make it hard for me to learn new information and to complete tasks. Most people who know me are shocked when I tell them that I have difficulty with working memory. I can recall funny stories that happened in the past with great detail. Many people don’t understand why I can recall memories, but struggle to remember dates or math facts. In order for me to remember something, I need to have a strong emotional connection to it. It’s hard for me to have an emotional connection to math, unless you count sadness, or anger at not being able to get the answer.

Working memory is more complex, technical, and can be tedious. Somewhere my brain loses the steps to learn new pieces of information. When I struggle to process new information people assume that I wasn’t paying attention. I remember attending a CPR class for a training at a previous job. I paid attention to the instructions, but forget the steps when I had to perform it on a mannequin. The instructor asked me coldly “What’s the matter? didn’t you pay attention?”

Another component of working memory is paying attention. I don’t have ADD/Or ADHD, but it can be tough for me to to concentrate or work in a noisy or cluttered environment. I was often told that I would have to learn to work with distractions. It is true that I have had to function with distractions, however I generally don’t do my best work with this method. I may forget an important step or miss critical information, I’m distracted. Taking tests and completing assignments in a quiet area helped me to have better scores. I can recall at one work place where I had to wear ear plugs.

Cognitive flexibility can also be difficult for an individual with executive function issues. A change in schedule or routine can cause anxiety or anger. It can be difficult for me to process changes to a schedule or routine. My brain has trouble processing a change. People who are Neurotypical can generally process changes in plans with more ease. When something changes suddenly, my mind struggles to comprehend the changes.

Cognitive flexibility also effects problem solving. Some people may freeze and not take action in a changing situation. Others may keep using an ineffective method to try to handle the situation. What helps me to process a changing situation is planning alterative plans, if things don’t go as planned. For example If I’m going to an outdoor event, I may see what indoor events are nearby in case of rain. Another helpful strategy is talking aloud the changes that are happening. I have had people assume when I speak the change aloud that I’m complaining. I may feel disappointed if it was something that I wanted to do, but I’m also processing the information that has been given to me. Hearing it aloud helps me to be able to understand new information.

Inhibitory control is another part of executive functioning. It’s how you control your impulses. People who struggle with this may blurt out inappropriate things or act impulsively. People who have limited self control are often excluded. Many times they don’t understand that they may have said something to offend the person or the message that their signals are sending out.

I have issues with inhibitory when I’m in difficult situations and someone is trying to upset me on purpose. It’s hard for me not to show it on my face or not to say something back. I had to learn how to have a calm response, and walk away when needed. It also helps to role play situations and to journal them to gain understanding. Maturity is also an important factor in Inhibitory control  When I was younger it was difficult to control emotions, but when I grew it got easier to manage them.

Executive functioning presents challenges for a person who is neurodiverse. People with differently wired brains often struggle with working memory, cognitive flexibility, and inhibitory control . Many times these behaviors are thought to be a bad or difficult person. The person who has difficulty is not trying to be difficult, but is having difficulty with the situation. Executive functioning issues are not a free pass, for someone to be rude, or abusive. Behaviors do have consequences and it’s important that they are dealt with appropriately. It’s important for a person with difficulty with this to find ways to learn, work, and live with a neurodiversity. The world is truly not designed for a wide variety of minds, rather it is designed for people who neurotypical. Until society becomes more understanding, people with executive functioning difficulties need to find ways to do things

The types of flowers my disability has been throughout my life.

Picture by Michelle Steiner

Flowers have always been a major part of my life. I can remember loving the smell and the beauty of them, from the time I was a child. I remember being young and picking flowers that my family grew. Another significant part of my life has been having a disability. I was diagnosed with a Learning Disability as a young child starting out school. Much like the flowers that changed with seasons, so did my view on my disability. All the flowers didn’t grow at once, but each at it’s appointed time. Each flower symbolized how I thought of my disability.

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When I was first diagnosed I was like a tiny violet. People remarked on how shy I was. In fifth grade I won an award for the shyest girl in my class. I had a hard time fitting in with my peers. Part of the reason was that I was an only child for many years and that I had more adult interactions. When I went to school I found it difficult to relate to the other students. The other reason that I was bashful was the rejection that I received. The small Western PA school that I went to made it impossible to hide or blend in. My peers knew that I went to a Learning Support. I was not viewed as smart and had many unkind remarks told to me. I wanted to fit in, and to speak up. I felt when I did I was ridiculed and laughed at. Struggling in school also made feel stupid as well. I doubted myself academically and socially. Keeping quiet was my protection. I bloomed but no one seemed to notice.

Pink lilies by Michelle Steiner

When I was a teenager my disability was like a lily. I was beginning to become more vibrant shades of pink, yellow and orange. I took pride and felt bold in things that I was good at such as reading and writing. I made friends in a neighboring school and with others from the community. Despite the increased brightness, I was delicate. I feared surviving the conditions outside of the public school. The strategies of extended test time, having the test read aloud to me and teachers giving me extra help, were working. Would my lily petals survive the harsh winter winds, of the real world? The school staff gave stern lectures about working hard or they wouldn’t graduate. I also had a teacher who didn’t think I could handle college, because of my math difficulties. As an adult I can see that this was meant to motivate students to do their best and work hard. I couldn’t see that having to repeat a grade and having to put in extra effort was building resilience. Thankfully I had a student teacher and case workers from Vocational Rehabilitation that saw my potential as well. Despite my fears I graduated and went forward.

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I felt like a Holly Berry during the first part of my post secondary years. I found a program at a community college, that I was interested in and had disability accommodations. I didn’t use these services at first because of the stigma that surrounded them. Many people thought that they gave students an unfair advantage. I had an advisor who wouldn’t go to a meeting with the office for students with disabilities to clarify a few issues. I also had professionals who told me that my education and job choices would be limited because of my disability. Despite the cold conditions, tiny red berries began to burst forward. Vibrant curved leaves formed on the branches. I graduated and worked in childcare settings. I was able to move out on my own. I always wanted more though. Due to financial reasons and my job downsizing I had to move back in with my parents. During that time I decided that it I wanted to to try to go back to school.

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When I went to university I felt like a sunflower. I wasn’t working and school became my job. I used the accommodations of a note taker, extended test time, and tutoring. I found a program that interested me and had the least amount of math possible. I was also more comfortable talking to my professors about my disability, and the accommodations I needed. Most of my instructors were helpful and knew I was trying my best. I had a few who didn’t understand, but I was better able to handle the situation. Using accommodations and advocating for myself helped me to do well at school. I basked in the sunlight of the accomplishment of getting my Bachelors degree. I also began to face the bright rays of light of what I could do and not focus on the gloom of the shadows of what I couldn’t accomplish. A sunflower can’t grow in the shade and neither could I.

Photo by Michelle Steiner

Red Rose by Michelle Steiner
Red tulip By Michelle Steiner

I have also had other flowers that have grown along side the featured ones. Lavender and lilacs have always been a favorite of mine. The sweet aroma of fresh lilacs is intoxicating. My grandfather grew a giant lilac plant in his yard and have fond memories of sitting underneath it. Every time I see lilacs I remember that there were happy moments in the past. The lavender also has calmed through frustrations when I tried hard but failed.

The vibrant energy of a red rose helped to give me the energy to move forward and try again. It helped to create a passion to want to help others on their journeys with having a disability as well.

The red, yellow, and orange tulips that bloomed every spring gave me hope. Every spring they are one of the first flowers to bloom. After a long winter and season of set backs, seeing the tulips helped to revive me. I began to have hope in myself.

Each flower that has represented my disability has made a beautiful bouquet. The variety of flowers, shows how my view of it has evolved. The flowers may be different but not less. Each has served a purpose in my life. Some of the blooms were more noticed and others grew in the shadows. Others may not see beauty in my blooms and accomplishments. Many people will say that I should be more accomplished. Other people will see only the beauty, but not the difficulties that often surround it. I have learned to tend to my own garden and ignore others who don’t understand. I now can see and appreciate the value and beauty each flower that my disability represents.