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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.

Always the Quirky Friend, Never the Love Interest

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When is the last time you saw a romantic movie where a person with a disability was a leading character? Me Before You doesn’t count, since it framed loving someone with a disability as a burden. I’m talking joyful, sexy, they lived happily ever after love.

Just like all humans ever, people with disabilities are complex and unique. No one wheelchair user is the same, and our experiences are the full range of the human experience, including love and romance.

Let’s play a game, name five characters with disabilities who are even featured in a romance movie. What about Love & Other Drugs? Or Something’s Gotta Give? Now how many of those characters are played by people with disabilities in representative roles?

…Crickets…

Love stories are at the core of human nature, and disability is an essential, interesting expression of humanity. We deserve to be represented. We deserve our happily ever. Still, Hollywood feels more comfortable with people falling for fish men, harpies, vampires, or giant gorillas than someone with a disability. Yet as barren as the romance genre can feel for disabled folks looking for representation, some films just get it right.

In The Station Agent, awkward, shy Finn (played by handsome-as-ever Peter Dinklage) moves to a small northwestern town, and finds new friendships and a love that allows him to live with more joy and openness. It is a bittersweet movie that playfully explores disability, while keeping its focus on the charming love story that serves as the films heart.

Frankie Starlight, another love story involving a dwarf protagonist, tells the story of the titular character and his life as a dwarf, his mother’s journey to survive the holocaust, and the unexpected love that blooms during the darkest years of his young life. Like Station Agent, Frankie Starlight is unafraid to recognize the very real harm of ableism, without tarnishing their sweet, optimistic stories that make the films so special.

Despite evidence to the contrary, it is possible to include disabled actors in love stories without exploiting and fetishizing. Being disabled or having a mental illness is a natural expression of the human experience. So is sex. So is love. And so is striving to tell beautiful stories that celebrate the best this life has to offer. Like our own lives, our stories will be made richer by the inclusion of perspectives that reflect the full scope of what love can represent. Cast us in your films, empower us to tell our stories, and hire us to direct our own.

Because in the end, I’m just a boy, standing in front of a multinational media conglomerate, asking them to love me.

What a Jerk: Disability and the Right to Criticism

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Through my work at Disability Rights Iowa, I’ve had the opportunity to meet hundreds of my disabled peers. I have meet inspiring, courageous young people with disabilities and I’ve met outright jerks. I’ve heard people with disabilities speak passionately and lovingly about their challenges, and I’ve heard people with disabilities speak from a place of hatred or even prejudice. Unfortunately, the public at large is all too eager to ignore our flaws and allow these missteps to go unchallenged, more comfortable in the assumption that we can do no wrong. Parents allow their children with disabilities to mistreat them, writing off their behavior as an inevitable consequence of their individual needs. Pastors have made similar mistakes, seeing the joy of a disabled child as somehow a miracle, as if a child enjoying life should be impossible inside a disabled body. This toxic mix of reduced expectations and the canonization of the disabled experience is profoundly harmful.

Just as people with disabilities have the right to self-determination, dignity and safety, we also have the right to be seen as fully realized human beings. To be recognized as a full person means facing the consequences of our behavior, or being rightfully called out. We have the right to learn from our mistakes, and that requires peers willing to push back and challenge our flaws. A right to our own measure of imperfection. Anything less is a trap, and just another expression of the dehumanization of people with disabilities.

We must be held to the same social standards as our non-disabled peers, and to be given the feedback all people need to better themselves. Much of what people with disabilities do is admirable and worthy of praise. But when we are perceived as somehow pure, or immune from the flaws all people share, we become irrevocably severed from a key part of the human experience. People with disabilities are pushed into tired, inaccurate clichés, painted as cherub-like pictures of self-sacrifice, perfect pillow angels whose flaws are few and virtues endless.

In eighth grade, I suffered a great deal. I was bullied constantly, in chronic pain, and living with the same social isolation so many young people with disabilities face. My peers kept me at a distance and rarely took the time to get to know me. But one girl in science class was different. Her name was Ashley and we were science partners for the better part of a year. Forced to work together, she really took the time to talk with me, get to know me, and shed the presumptions that my disability carries with it. She saw me as a full, complex person and what she saw, she hated. Ashley made an effort, saw me for me, my talkative, bubbly, smug teenage front on full display and thought I was insufferable. I can never thank her enough for it. It was only after I was seen, and my self-centered perspective really critiqued that I was able to start looking past my own suffering and see how my actions affected those around me.

People with disabilities are not innately warm or joyful, wise, kind or even friendly. We can be petulant little brats, or selfish and cruel. Our experiences can numb us to the suffering of others and stunt our growth as people. We can be intolerable martyrs or manipulative opportunists. Examples are common enough. A dwarf making an unwelcome crude joke, trusting it will be tolerated because of his size. A blind man using his disability and perceptions about his limitations to justify copping a feel, abuse disguised as accommodation. We play the fool, taking advantage of our culture’s reduced expectations, to be the loud mouth at the bar, free to harass knowing no matter what happens we can’t be physically confronted. We can be instigators and we can be the bullies.

Not all assumptions or caricatures of people with disabilities are on their face negative. We face reduced expectations or outright hatred and discrimination, but we also stomach the cloyingly sweet presumptions about our own inherent benign existence. Cast as we are as an inspiration, or an angel, or an adorable sexless cupid, it is all too easy to begin to disbelieve in our own capacity to do harm. We are taught too often to live selfishly, to seek our comfort above the needs of others, or abandon our social responsibilities. Disability becomes in itself a virtue, and simply enduring the experience is seen as an accomplishment, where even subjecting us to justified ridicule is treated as taboo. The impact of our immunity can be seen in spaces made up primarily of the disabled or neuro-divergent. In spaces created to welcome and organize the autistic community, autistic women frequently experience constant pressure from their male peers. Enduring either incessant flirtation to outright harassment. Women and non-binary young adults looking for community find an aggressive, unwelcoming dating service. To complicate matters, the line between disability and personal failing is rarely distinct.

Disabilities can create barriers that present at first glance as moral flaws. A well-organized person can be made absent-minded by medication, an active adult made to appear a couch potato by the limitations of their chronic fatigue. It is an important part of inclusivity to acknowledge these experiences. But the inverse can be true as well. People with mental illness can still be abusers, and people with depression can be cruel. Those with developmental disabilities can cause discomfort by unintentionally missing a social cue, but sometimes it is due to misogyny, or by discounting of the feelings of others. Every person with a disability has used it to excuse their mistakes, guilt-trip their peers or cashed in the world’s greatest rain check. Sometimes we use it as a cudgel simply to get our way. Sometimes despite all appearances to the contrary, we are doing our very best. As a naturally lazy person, even I can’t always tell where the significant limitations of my disability end and my own personal flaws begin. Life must allow for these complexities, these muddled lines. It has to be possible to see a person within a broader context, and still expect better of them.

Criticism is not always a negative, nor is protecting the disabled from that criticism to our benefit. It can serve a valuable purpose, ridicule not of a person’s identity but of their actions and choices. Criticism is an opportunity to do better, if we miss out on being criticized, how can we improve? Part of human dignity is not just affirmation, but the dignity that comes with being held to account. The dignity to be called a jerk for acting like one, reminded as necessary of the un-kept promise of the person we were meant to be. People with disabilities must do a better job of calling out our peers behaviors in a loving and empathetic way, and the able-bodied community must have the courage to take a step back from their own assumptions, and give all people the same opportunity to change for the better.

A New Design

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Heather Reimers is at ease with her sense of style. Her look is a striking contrast of classic, sweeping dresses and youthful tattoos. But her love for fashion goes beyond the aesthetic. She cares about not just what she is wearing, but who made it, how and why.

From a young age, her artistic talents lead to her pragmatic approach to disability. Born with brittle bone disease, Reimers’ height made taking ownership of her own clothes a necessary skill from a young age.

“I learned how to sew when I was four, I had to hem my pants. I was going to have to hem every pair of pants I would wear my whole life”

Later, she was introduced to Edith Head and the endless possibilities of costuming. She adored Lady Gaga and Alexander McQueen, patron saints of the avant-garde. Growing up, her love for fashion made embracing it as a career path a no-brainer and she dove into her formal education with gusto, in spite of the prejudices that people with disabilities face in the fashion industry. Reimers found herself restricted by the logistical realities of the business world.

“We were required to take certain classes . . . and one of them was a global sourcing class. We had to read a book, it’s about how a t-shirt is made. Where does everything go? From the growing of the materials, to the end of the shelf-life. So we saw how it started in Texas, went to California, Vietnam, India, the entire cycle and we broke down what is going into this shirt. Just one shirt.”

Her education began focusing on the skeletal structure on which the fashion world is built, and didn’t allow space for designing for unique functional needs, or for body types outside the norm.

“In college, I really, really, really struggled. At my university they teach ready-to wear, which is what’s going to get you a job. They don’t teach you functional, cool stuff until your last year. So I’ve tried really hard in my designs to put functional pieces into everything I was making. So I wouldn’t use snaps, because they are hard for some people.”

Her desire to address the needs of the disability community, and allow her designs to reflect more than a cookie cutter template conflicted at times with the focus of her studies, but she never lost a personal interest in designing inclusive, functional clothing.

“I got really good at jackets, anything that would be easy to pull on. My friend has MD [Muscular Dystrophy], she can’t find a good jacket to save her life…I wanted to look at what the fabric could do for the client . . .Velcro is an easy one to go to, but unfortunately isn’t the most appealing.”

Reimers’ own experience shaped her frustration with the limitations of the clothing options for people with disabilities.

“[Shopping is] a gigantic pain in the butt. I have to shop in both the little kids and adult section. So I get some weird looks in Target”

After graduating, Reimer fully committed to her career and relocated to the west coast.. It became apparent that by dedicating her life to this field, she would be forced to become complicit in a system that did a great deal of harm.

“I took an internship last summer in Los Angeles and had a terrible experience. It was everything they warn you about, thrown into a bubble. I got the advantage of seeing how things are built because they had a factory right up stairs. . . I saw how much waste goes into these products, how poorly people are treated. . . . The awful side of fashion.”

Despite her continued passion for design, form and function, the realities and scope of the problems within her industry were hard to stomach.

“Most companies doesn’t actually have factories in house. So they have to send that to China, or Indonesia or Vietnam. Which is where my personal morals came into it.”

Then Reimers began to have a sense of complicity, and was conflicted about pursuing fashion as career. Her desire to merge her youthful passion for color, design and innovation with the stark realities of the fashion industry continued, but without direction.

Yet despite the near fundamental hostility the fashion world has for non-traditional body types, she views it less as a problem and more as an opportunity to educate others.

“The unfortunate truth is it costs quite a bit to make an accessible garment. The reality is you can’t make money from anything. . . I’m not joking you. Fast fashion is there to make money. They are there to make their CEOs a lot of money and if they can’t sell to a large quantity then they don’t really care.”

As for the brief experiments major brands have made towards accessible clothing for children, they have left her somewhat unimpressed.

“I think it’s great, but once again it’s skipping over adults. Tommy Hilfiger and Target are targeting the white people, the middle class white people who have the disposable income to spend on their children. Not necessarily the family with a kid with a disability that are living paycheck to paycheck.”

Reimers’ understanding of the fashion industry doesn’t lend itself to easy solutions, or easily digestible narratives surrounding accessible design. Too often, issues facing the disability community are painted as gaps in knowledge, issues that could so easily be addressed if only we changed some minds, humanized our community, or crafted the perfect, unsurpassable PSA.

Reimers holds to no such misconceptions. Clothes, like the people who wear them, are a product of complex systems. A carefully calibrated ecosystem designed to meet a consumer need, and make profit doing.

For Reimers, having an honest conversation about making large scale industries accessible demands large scale thinking, and an acknowledgement that people with disabilities not being a consideration in the fashion world isn’t an accident, but the result of purposeful actions.

“So it’s a matter of giving people with disabilities good paying jobs, and helping them get into the workforce more…and now fashion companies can get into a market, because we have more money to spend.”

The solution is not education, but empowering the disabled community to have purchase in our economic systems, and an industry whose success or failure doesn’t depend on exploitation or environmental harm. As a first step towards sustainability, Reimers encourages people to think about how to re-use their old clothes instead of just throwing them away.

Whether inside the fashion world or outside of it, it’s clear Reimers is going to commit herself to the values of economic and disability justice. She loves fashion, and is working towards a new design.

The 28th Anniversary of the ADA

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As a young boy, my mother brought me to Iowa’s capitol to celebrate the 10th anniversary of the ADA. It was a typical Iowa summer day, hot and humid, but the grounds were abuzz with excitement. For the first time, I saw people with disabilities of all kinds, together, reflections of one another despite our differences, gathered to celebrate all the progress that had been made in 10 short years. The event was an outpouring of joy at what we have achieved. An opportunity to express our gratitude to Senator Tom Harkin who authored and introduced the ADA, Senator Grassley who supported its passage, President George H.W. Bush who signed it, and to all those who helped to make the ADA a reality. It was a day I’ll never forget. Beyond introducing me to a law that would play a huge role in my life, it was an example of my mother teaching me to celebrate my disability, to celebrate my peers, and to never forget that my disability made me who I am, a person worthy of love and respect.

Once signed, The Americans with Disabilities Act became, as Senator Harkin often terms it, an emancipation proclamation for millions of Americans with Disabilities, and an all-important inheritance for the generations to come. For me, the ADA is a collection of legal protections that have proved essential throughout my life. Without it, I would not have graduated high school, I would not have met my wonderful friends at Drake University and I certainly would not have my job at Disability Rights Iowa. Every stroll through Valley Junction, every note of bluegrass enjoyed at the Iowa State Fair, every afternoon retreating to the cool of a movie theater with my sister on hot summer days are all memories made possible by the ADA.

I am a proud to have come of age in a post-ADA world, shaped by its indelible impact. As member of the ADA generation, I was allowed to grow up with the belief in my own value secure. A belief that my future was not restricted by my disability, but limited only by my talents and determination. Should I doubt that truth, I had a document with the signature of the President of the United States confirming my value as a person.

The American’s with Disabilities Act affirmed our immeasurable value and sought to bring about full participation in society. At the time of its passage, the ADA was radical, expansive and ambitious. Reading it, you can’t help but appreciate that its authors were attempting nothing less than the total removal of the societal constraints imposed on the disability community. It addresses everything from employment to educational access, curb cuts to captioning. Its very existence is a testament to the political strength of people with disabilities and their allies. It exists because of the efforts of millions, a nationwide cry for full citizenship, and for long overdue protection from systemic discrimination. As its scope and full meaning was supported by the courts, it became a means of moving away from the institutional approaches to care, towards true inclusion and choice.

Twenty-eight years later, the enduring legacy of the ADA continues to transform this country, and level the playing field for millions. For 28 years, our society has opened itself to people with disabilities in ways previously unimagined. This change allows members of the ADA generation to dream and succeed because of the unique gifts of their disability, and not in spite of them. People with disabilities are reshaping a world that is hostile to our very presence, and we are what we always knew ourselves to be: A natural and essential expression of the human experience. We have come a long way, achieved much with the help of our families, communities and allies. We must be proud of and celebrate our successes.

But even as we allow ourselves a moment of celebration, we must turn our thoughts to those unrepresented here this afternoon. Today, a young person with a disability will spend their time throwing plastic toys into a bag. Their future counted in cents by the hour, their ambition and talents stunted by a culture of lowered expectation. Another will spend their day in bed, with filthy sheets and festering sores, unable to receive the services essential for their dignity and safety. Another still will struggle to maintain their independence in the face of mental health challenges and crushing stigma, working against institutionalization. Our failures to fully make manifest the promises and protections of the ADA have severe human consequences.

For too many Americans, the ADA is not yet a reality. The transformation that so affected my life for the better remains for many a half-filled promise. This is a collective failure. Yet, the failures of yesterday do not dictate our future. Today, let us not just celebrate the achievements of the past, but the fact we have within ourselves the capacity to bring the ADA to all those in need of its protection. Is this a challenge? Absolutely. One we are well equipped to meet.

If neglect and prejudice persist as a form of institutional violence, then let empathy become a form of institutional love. Let our policies, practices, and minds be shaped by the higher principles of inclusion and self-determination so central to the ADA’s purpose. Today we celebrate how far we have come, and the hard road left to travel. The march goes on, the march to define and defend what Justin Dart Jr. called “a landmark commandment of fundamental human morality.” Everyday a powerful and new affirmation of our rights as Americans, and the unique beauty of the disabled experience.

Today is our celebration. Tomorrow, we get back to work.

Olmstead: A Declaration of Independence

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This Fourth of July, Americans will come together to celebrate our independence and the incredible patriots who made it possible. But those patriots were not just wealthy landowners in powdered wigs. Patriots come in all shapes and sizes. They are found on our battlefields, in the backs of buses, or in the hallways of a nursing home. They are anyone who holds in their heart the values of independence for all and insist on making those values central to the American experience. And two such patriots helped to provide the independence for a generation of people with disabilities

This month people with disabilities celebrate our own landmark of independence, the Supreme Court’s Olmstead Decision. Two women with mental health challenges had long sought to live and work in the community, and were continually denied that opportunity. Forced to living in a hospital setting despite these wishes, they went to court and fought for their right to receive government services in a setting of within the community, a right to the essential supports that allow people with disabilities to live lives of their choosing. Such a decision is what allowed thousands of American’s with disabilities to leave nursing homes, and live as fully independent members of the community.

As we celebrate our independence this week, we must take the time to think of the millions for whom it remains is an elusive, unreachable goal. Take time to acknowledge those who remain needlessly segregated and restricted in institutions, live under unnecessary guardianships or even feel just by being a person with a disability that their choices are less important. Independence was won by those who came before us and must be won continually, an evolution which will allow our nation to one day finally embody the lofty principles on which it was founded.

But we also have time to be thankful for how far we have already come. To think of those brave women who made the Olmstead Decision possible, and in doing showed as a way to our independence. People with disabilities and our nation made better for their bravery.