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And Yet, We Persist

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While July is a time to celebrate Disability Pride Month, the journey to achieve pride for the disability community can last much longer than a month. Pride means that a person can feel accomplished in themselves and their identities. However, this is not so simple for the disability community. From inspiration porn to internalized ableism, the disability community must grapple with many outside forces from society before pride can be achieved within. As the disability community fights daily for their worthiness to be recognized and valued in society, it can be extremely difficult to shed society’s ableist ideas and value ourselves. Even though it is no longer July, having pride in ourselves and our disabilities doesn’t just stop. Neither does the fight against ableism to find pride in the first place.

            As a child, I used to tell myself that I was disabled because otherwise I would be too perfect. (I know, quite some unbridled confidence I had as a child). I strutted through my elementary hallways – as much as I could with long-leg braces – and kept my head held high. I was proud of myself without even having to consider why. That was until my strut down the hallways suddenly become the root of my bullying. My peers would mock me behind my back as they attempted to mirror my inward turned hands perched on my hips. The person I was so proud of as a child slowly slipped as I began to shrink into my surroundings. I was questioning for the first time who I was due to my disability. As a child, my disability was a source of bullying and isolation and never something that I thought would be the greatest source of my pride as an adult.

While I was already struggling immensely to find my own identity as a disabled person, I was having to constantly justify my body to others. Instead of asking my name, children would gape at my hands and immediately blurt, “What’s wrong with you?” Parents would rush over with an apologetic gaze as they quickly shushed their child and walked away. Meanwhile, I was left wondering what was wrong with me. How could I explain to that child that I was just born that way? Why did I have to? Why were parents so ashamed they were unwilling to have a conversation about disability? How could I explain all of that as a child myself who didn’t even know how to accept my disability in a world that wasn’t made for me?

My disability was and still is the first thing others see when they meet me. While this often means that I am met with stares and whispers behind my back, a simple initial interaction in a doctor’s waiting room was the first moment I remember feeling pride in my disability. As an anxious teenager, I sat reading my book in attempts of forgetting about my appointment and remained oblivious to my surroundings. Something inside of my urged me to tear my eyes away from the page as my eyes landed on a little boy sitting across from me. A smile quickly stretched across both of our faces as we noticed we had the same rare disability. This community and joy in finding someone who looks like you gave me hope. I knew there were other people in this world who would rejoice in my disability, but first I had to seek out more moments of pride as I grew in my identity.

 Even as I collected these moments of pride, strangers never failed to make my question myself. Complete strangers would approach me at family dinners and ask if they could pray for me. My skin crawled as the stranger grabbed my hand and looked at me with pity swimming in their eyes. Whether I was walking down the street, going shopping, or attending college, I was congratulated by strangers. I was successful because I had managed to do something beyond being disabled. Stella Young coined this idea as inspiration porn. Inspiration porn is when “we’re objectifying disabled people for the benefit of nondisabled people.” Images and quotations that feature disability, such as “The only disability in life is a bad attitude,” are used to “inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person.’” Inspiration porn increases the fear and stigma of disability. Instead of recognizing the value of the disability community, able-bodied society marvels at us because the simple act of living with a disability is more than they can imagine doing if they were us.

I didn’t realize the vast impact these strangers had on me until I learned about internalized ableism my sophomore year of college. Internalized ableism is when the stigma and social conceptions of disability become so ingrained in a disabled person that we begin to believe society’s ideas about ourselves. I’ve struggled for as long as I can remember with thinking I was a burden, I took up too much space, and I was too dependent on others. My family was not reinforcing any of those ideas and I certainly didn’t come up with them. But popular movie tropes taught me that I was a burden on the caretakers in my family. The medical industry ensured I knew I took up too much space as insurance denied my medical resources. My peers showed me I was too dependent as they went off on journeys that weren’t physically accessible without me. Why, even as a child, was I instilled with the idea that my disability held me back? Why did my disability make me any less perfect? Any less me? It’s because even at the young age of 6, I was ingrained with internalized ableism.

If we grow up with internalized ableism, how is the disability community supposed to find pride when society tells and shows us repeatedly that we have no value or space in our world? Why is it our responsibility to fight this stigma to love ourselves? Why do we have to prove our worth over and over again? Unfortunately, there is no easy answer to any of these questions. Even finding our own personal answers does not necessarily mean that we achieve pride in our disabilities. The disability community has been hidden away for decades because the world fears disability. The world cannot fathom how we find pride in what they view to be broken bodies and minds. But we do. We find pride in ourselves as we survive and thrive despite all of these obstacles. We find pride as we persevere and achieve our dreams despite the numerous times they said we couldn’t. We find pride as we truly inspire our peers because of our accomplishments rather than just our disabilities. We find pride as we fight for accommodations to access our world. We find pride because we have accomplished incredible progress as a community. We find pride because we are fighting everyday against a society that doesn’t value us and a world that wasn’t made for us.

I find pride because at the end of the day I am who I am because of my disability. The lowest lows I have fought against and the highest highs I have achieved have been due to my disability. My hopes, dreams, motivations, and passions are all driven by my disability. Others might not see the internal battle I fight daily against ableism. But surviving this fight, even on the days where I don’t believe I can, is the greatest source of my pride. As an adult, I firmly believe that I am perfect because I am disabled and a part of the glorious disability community that will never stop fighting until society finds pride in disability and praises our value.

By: Allie Tubbs

Disabled College Students Deserve Better

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COVID-19 changed our everyday lives in the blink of an eye. I went from college midterms and planning for a summer abroad to being rushed home for an extended spring break without any idea what the rest of my semester would entail. Professors brainstormed with students how they could possibly teach online and still give us the education we deserved. Students shared excited but anxious smiles as we waved goodbye to our roommates for what we thought would be a brief break. I ran across campus to be wrapped in the tightest hug without even thinking this would be my last hug from a college friend for the next year. Students relished this opportunity to sleep, but we never realized that we would not be waking up from the nightmare of COVID-19 anytime soon.

I returned home in a bubble of constant anxiety. As a disabled person with a compromised immune system, I was genuinely terrified. There were months as a kid where I couldn’t function because I got the flu. If I was that sick then, I had no idea how or if I can survive COVID-19. Even if I survived, how was I supposed to complete college classes while being so sick? My family quickly shut down any in-person interactions with friends and extended family in an attempt to keep me safe. However, I know that not everybody took these necessary measures.

As we transitioned into online classes, my anxiety exponentially increased under the stress of my college workload. Professors tried to ease our loneliness by inviting students to share how they were coping with our ever-changing reality. When my peers explained how they were meeting friends outside or not paying much mind to the pandemic, I realized I would be living a drastically different life from them solely due to my disability. I won’t say I was shocked because I’ve lived this experience many times before, but I will say that I felt even more isolated. Unlike my peers, I would not even have a glimpse of my normal life for the next year because I am immuno-compromised. Professors, friends, and even the media cautioned us that our mental health was so important, and we had to maintain some quality of life. However, my quality of life is extremely dependent on my health, and there was no way I could risk it. This moment was when I began my year-long battle, not with COVID-19, but with the choices of society, political leaders, and my college.

I decided to live at home and continue with remote learning for my fall and spring semesters. This was a heavy choice and the weight of it was made worse by the abundance of required documentation my college needed to approve my request. Could my college force me to come back to campus even if it was detrimental to my health? I’m extremely grateful I never had to find out the answer to this question.

Zooming into class has some advantages: I don’t have to wake up as early, and I don’t have to wear a mask all day. However, that’s about the extent of the benefits of remote learning. My peers file into the classroom as I click to launch the meeting. They chat excitedly before class, finally seeing each other in person again. I sit on the other side of the screen and strain to hear. As my peers interact, I watch, knowing that I am miles away from campus and miles away from ever having this opportunity again.

When I served as a peer mentor for a freshman class in the fall, I realized that while their semester was not normal, they were experiencing many of the aspects of college I am missing every day. I watched as new friendships formed and grew strong during this stressful time. Classmates would sit under the maple trees as they talked instead of working on homework. They ran across campus laughing as they attempted to escape the freezing winter air. They hung Christmas lights in every single corner of their dorm room until you could see them from outside. They counted down the days until break on their shared whiteboard and smiled brightly every time they crossed off a day. They vented about their hard days and found comfort in the empathetic words of their roommate. This used to be my college experience. If I had known that I would never have those moments for the next year, I would have laughed more, hung even more lights, and hugged so much harder. While I am stuck at home, I know there are students from my college still creating those unforgettable memories. This knowledge makes my isolation so much harder to bear.

While remote learning is far from perfect, it has not been my biggest obstacle this school year. Every time students go to bars or completely ignore the pandemic, I realize that they prioritize the college experience over the health of everyone else. Every time the college eases restrictions, I know that I can’t risk returning to campus. Every time political leaders emphasize that COVID-19 is only harmful to vulnerable populations, I can so clearly see the ableism rampant throughout society.

COVID-19 has stolen so much from all of us. For me, I’ve missed out on an entire year with college friends in what is supposed to be the best experience of my life. However, COVID-19 has also wholly eradicated any security I believed I had with my health. I’m relegated to my house while other society members feel free to continue with their everyday activities. I will remain isolated away from my college community until I qualify for a vaccine. Only then will I regain some aspects of my normal life. But I will take with me the lesson that I must be the greatest advocate for my own health when the institutions supposed to protect the vulnerable continuously fail. My life and the lives of the disability community should mean more than society’s attempts to grasp the coattails of normalcy in a world that will not be returning to normal for quite some time.

We Should Not Have to Risk Our Lives to Vote

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While every election is important, the outcome of the November Presidential election promises to be a turning point for America. As a disabled individual, the next four years can drastically alter my participation in society. From Medicare to COVID-19 policies, any funding cuts for the disabled community can be life-threatening. The success of every disabled person depends on voters turning out to #CriptheVote and control our future. However, COVID-19 is significantly decreasing the opportunities for disabled individuals to vote safely and independently.

Voting in person poses a health risk for those with compromised immune systems. The simple solution is that disabled voters turn to absentee ballots or curbside voting. While I am extremely privileged to have this option, my family friend who is blind faces numerous obstacles. In June, she voted absentee successfully, but only because of her own ingenuity. My friend voted by using a magnifying glass with a paper ballot. This painstaking and belittling experience could have been easily avoided, but Iowa failed her.

For the 54,000 visually impaired Iowans, voting from home is completely inaccessible. Iowa offers large print voter registration forms, but that is the end of their accommodations. Visually impaired voters or those with fine motor issues rely on accessible voting machines at polling places to cast their ballot. However, multiple individuals touching this equipment while being exposed to several people at polling locations is extremely dangerous. Asking disabled voters to risk their lives when they could easily vote from home with accessible absentee ballots is ridiculous, ignorant, and inexcusable.

Accessible absentee ballots are blank ballots that can be sent electronically, read by a screen reader, and then filled out with marking tools on a computer. Once completed, these ballots can be printed and mailed like any other absentee ballot. These ballots can be sent through established systems, such as Democracy Live and Five Cedars, or a state’s online portal. This accessible technology guarantees that disabled individuals can vote privately and independently, as is required by the Help America Vote Act.

Some concerns within the technology community are that sending ballots through an online portal can be easily hacked. However, they completely ignore the fact that every state provides electronic ballots for military and overseas voters. Many states merely attach a ballot to an email for these voters, which is much more dangerous than systems being provided for the disabled community. For example, Democracy Live uses an AWS system which has a FedRamp certification. Systems with this certification are approved for use by federal security and intelligence agencies.

As Iowa already provides electronic ballots, they have the technology readily available to apply to the disabled community. COVID-19 has already forced abled-bodied individuals to move to telehealth, remote work, and online education, which were all previously denied for the disabled community. The disabled community deserves to receive the accommodations they need, when they need them. Not only after a global pandemic reveals that online alternatives are credible and successful. Accessible absentee ballots are the next step to ensuring the disabled community has equal access to the vote in November. As the largest minority group in America, the disabled community has the potential to overwhelm this election with our political ideas about our own bodies and lives. I vote because of my disability, but Iowa prohibits absentee voters because of their disabilities. Iowa must implement accessible absentee ballots to ensure all of my community can contribute their voices to our future.

Iowa’s New Concussion Protocol – What’s it really Like?

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Introduction

If you don’t know any high school athletes who had a concussion recently, you might not know that Iowa has new laws in effect to protect kids from getting re-injured. Getting another concussion before the first one has healed can make a concussion worse, or even lead to a deadly condition known as “second impact syndrome.” Iowa’s new laws make sure that kids are fully ready to be back in the classroom with no accommodations (return-to-learn) before they can start being in sports again (return-to-play).

Guests writers with Disabled Country are here to offer a first-hand look at concussion recovery from the perspective of a high-school athlete; 17-year-old Max and his mom Shari were kind enough to share their story with us.

Max’s Story

The Injury

This winter I had two separate concussions in the span of a little over a month. The first happened when I was running on a treadmill and I slipped and hit my head. The second came 2 days after I was medically cleared from the first concussion. I went on a weekend-long ski trip. While I didn’t take any direct hits to the head, I came back from the ski trip with much more severe symptoms than I had after the first concussion. It was after the second one that we decided to go to ChildServe.

The worst symptom that I experienced was the nausea. The nausea came and went pretty suddenly, but when I felt it, I couldn’t even shift my position in my seat without immediately feeling like I was going to be sick. While that was the most extreme symptom that I felt, the ones that bothered me the most were the symptoms that made it nearly impossible for me to do any school work. The difficulty concentrating, and the mental “fog” caused me problems with everything that I did. I couldn’t pay attention in class at all, so I didn’t learn anything about the subjects we were covering, I couldn’t do any writing or reading, and I couldn’t take any tests. Those symptoms made everything that I normally do in my daily life way more difficult.

I was completely sidelined from almost everything. I couldn’t do any sports, I didn’t go to band or gym class for almost a month, I couldn’t do any tests in school, and I couldn’t even watch T.V. for a couple weeks because it bothered me so much.

Finding Support

When we started going to ChildServe’s Concussion Clinic, the team of Brain Injury Specialists did lots of tests to get measurable statistics for how my brain was functioning. I would do mental work (like being given a set of words to remember and trying to recite them), word searches, basic mental math, and other things of the sort. I would also do physical some activities like balancing, along with reaction time tests using a piece of technology called a Dynavision board.

As I began to get better, the team could repeat the tests to see how my brain was recovering. They also gave me a lot of suggestions for school like taking breaks, not doing tests right away, and not eating lunch in the cafeteria. At home, they suggested limiting screen time at first.

These guidelines were easy to follow because I needed them and I felt better when I followed them. The most important thing is that the guidelines were tailored to what I needed. Someone else might have different guidelines based on their experience and symptoms.

Return-to-learn and Return-to-play

The return-to-learn and return-to play guidelines were beneficial for me because it felt good to know that I could get all the assistance that I needed at school. My teachers were legally required to help me or make adjustments if I needed it.

The requirement that you have to complete the return-to-learn before starting return-to-play was very frustrating. The specialists at ChildServe taught me that it’s recommended for people who are recovering from concussions to do some light physical activity as you start to feel better. Over time I was ready to start exercising a little bit, and some of my therapy at ChildServe even included some jogging on the treadmill so they could make sure it didn’t start my symptoms up again. Meanwhile at school, I couldn’t join in on any practices with my team because I had to complete the return-to-learn process first.

It felt like it took forever to get cleared, and I was so desperate to get back into athletics. I didn’t feel like I needed all the treatment that I was getting at the time, but when I look back at it, I’m very glad that I was required to go through all the steps, because I really did need them. Even though I wished I could be active at school sooner, I do think that allowing kids to start return-to-play while they are also doing return-to-learn would cause problems because kids would go back into sports before their brains are completely healed and be at risk for serious or deadly re-injury that can come with second impact syndrome.

A Parent Perspective, from Max’s Mom:

When Max had his concussion I really didn’t know where to go. Even though I knew many people who had children who had concussions, this was our first experience with it. I had no idea what concussion recovery was supposed to be like. I was worried that Max would reinjure himself or push himself too much or too early. My biggest concern was CTE. The high school nurse referred us to ChildServe which was incredibly helpful.

It was a huge relief to be able to rely on ChildServe’s expertise and experience. Their whole team evaluated Max on our first visit and they developed a plan based on their assessment of his needs. I was very comfortable with the process and felt like he was getting the best assessment and care possible.

With the weekly visits, I was able to track his progress and see how he was improving. ChildServe also worked very closely with the high school nurse so that she had all the information she needed to move Max along the established protocols at school and with sports. With Max being unable to attend class, focus, or do homework for weeks, it was very helpful to have the communication between ChildServe, the high school nurse, trainer, and me. Everyone had all the information we needed for both the return-to-learn and the return-to-play protocols. The nurse was able to keep the teachers informed of what Max needed and the teachers were very supportive.

One challenge was the backlog of homework that he had since mental fogginess was an issue for a long time. The teachers reduced the amount required, which was helpful, but he still ended up trying to work through quite a bit of late work at the same time he was trying to keep up with his classes. Another challenge, for him especially, was that he had to complete return-to-learn before he could start return-to-play. This meant he couldn’t practice with his team until mid-way through the season so he is having to catch up with that as well.

We’ve learned a lot throughout this experience! First of all, we learned that a concussion can show up in different ways and can often show up several days later than the original injury. With Max’s first concussion, he didn’t have symptoms until a couple days later and even then, it wasn’t obvious – he didn’t feel right and he couldn’t concentrate. Secondly, I highly recommend coming to the ChildServe Concussion Clinic (and I don’t have to say that)! It was so helpful to be able to rely on their expertise, they were great to work with, and it relieved our concerns.

Afterword

The Iowa Concussion Consortium (ICC) and Brain Injury Alliance (BIAIA) has been committed to helping schools have better guidelines for students after concussion and brain injury. The ICC identified the REAP (Reduce ‱ Educate ‱Accommodate ‱ Pace) Protocol as the best-practice concussion management program. The REAP program was developed in Colorado by Dr. Karen McAvoy, recognizing that outcomes are optimal when a “multi-disciplinary team” approach is utilized, involving and educating school administrators, teachers, coaches, athletic trainers, school nurses, school psychologists and counselors, as well as parents and community medical professionals, to coordinate care and recovery from concussion. ICC works to bring REAP to each multi-disciplinary team statewide. ChildServe is a valued partner in this effort.