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From Disability Rights Iowa: A Tribute to Judy Heumann.

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No amount of words fully represent the behemoth of a woman Judith (Judy) Heumann was, yet, so many describe her perfectly. Trailblazer, advocate, sassy, strong, fierce, independent, resilient, resistant, powerful, force… I could go on. The following statements serve to remember Judy all the way from Iowa. Many of us never met Judy, but her life impacts us all and always will.

From Disability Rights Iowa: A Tribute to Judy Heumann.

I was one of the lucky in the masses of people to meet Judy Heumann. I was 22 and in college working in a Disability Resource Center and I met her over the phone. As soon as she answered the phone she asked if I had a disability – something I would soon become accustomed to whenever Judy met someone new for the first time. I responded with “Yeah, I have depression but its not that bad so…” and Judy, the firecracker advocate for disability rights and representation scolded me. She was right of course, she wanted to know if I thought that everyone who had less severe depression than me didn’t get to say they had a disability  because I had arbitrarily decided my depression wasn’t that severe. She was, to say the least, influential on me and my life. For the short amount of time, I was able to call Judy a colleague I learned a lot, I listened, and I got to share with her the experience of being disabled – something she inspired me to proudly acknowledge and wear boldly. I got to call Judy a friend. There isn’t a part of life as a person with a disability that Judy didn’t impress her strong will upon. So many of our rights are due to the hard work of Judy and so many of her friends and colleagues. I know that my life was impacted by that first interaction I had with her on a personal level, and I know that her life impacted my place in society. Judy is the reason I am seen and represented. Her passing leaves an enormous hole in the disability rights community, but to bring solace I remember Judy’s faith, where when someone passes the phrase “May her memory be a blessing” is spoken. Her memory is a blessing today and always. Thank you, Judy.  

Katelynn Schultz

While I never got to meet Judy I have been fortunate enough to benefit personally and professionally from the outcomes of her tireless and fierce advocacy. As a disability rights attorney I rely on the anti-discrimination laws that Judy and other disability civil rights activists and supporters fought for with their lives decades ago.  The legal protections for individuals with disabilities are stronger because of Judy and her ability to inspire a groundswell of dedication and passion in the disability community and beyond. Judy achieved so much in her lifetime. The full impact of Judy’s efforts won’t be realized for many years, but I feel that one of her greatest legacies is the generations of disability advocates empowered and inspired by her who will continue the fight.

Whitney Driscoll

On March 4, 2023, I laid on my friend’s couch. Just moments before, both forms of my health insurance denied covering my new heart medication that would improve my quality of life as a person with disabilities. I hadn’t been able to stand or walk in days, and this medication would change that. So, I opened Facebook to mindlessly scroll.

Immediately, I saw the news. The disability community lost one of our own.

In the three days since, I’ve worked on coping with the sadness of losing Judy. I’ve also worked on coping with my anger toward the people who aren’t like Judy, who aren’t willing to change the world. Judy was always not just trying to change the world, but who succeeded in doing so.

Judy once said, “I wanna see feisty disabled people change the world.” 

And Judy, I’m going to do just that – just as you have allowed me and so many others to do. I’m going to be a feisty disabled woman, changing the world.

Lacee Be

Judy Heumann’s activism and advocacy are one of the main reasons why federal laws like Section 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act exist that I use daily to advocate for equal access to an education in the least restrictive environment for my clients.  Therefore, she has a daily impact on my work and my clients.

-Nathan Kirstein

I often share stories with friends and colleagues about my brother, who had an intellectual disability. I’ve talked about my mom’s advocacy to ensure he had the same opportunities as his siblings and prayer that he would feel content and happy with his life. 

When my brother was born in 1954, Judy Heumann would have been around six years old. She would have contracted the Polio Virus and become paralyzed at age two. Judy’s mother, I suspect, would have been making plans to raise her child as she had always planned, figuring out any barriers or bumps in the road as they arise. That’s just what my mom was doing here in Iowa.

As my mom and other Iowans were figuring out what the barriers were,  Mighty Might, as Judy’s mother was known, was raising a daughter that would one day bring people together to lead and begin the movement, the Disability Rights Movement, of which I am proudly a member.

Footnote: My brother passed away due to a sudden illness in 1993. Prior to his passing, he moved to one of the earliest HCBS settings in Cedar Rapids, he worked at a local bank two or three days per week utilizing public transportation. He became a trusted friend to many bus riders including a District Judge. When not working at the bank, he worked at a local workshop. He was not one to sit around the house. Mom also passed away in 2011. I like to think that Mom, my brother, and Judy can join together to inspire me until my work is done. Perhaps they share the same legacy. Perhaps I do as well. How about you?

-Charlene Joens

I read Judy Heumann’s book, Being Heumann, in just one day, start to finish. I was enthralled by Judy’s experience and her message and her representation of the disability rights movement. I had just recently started my career at DRI when I read this book and her book fueled my passion and assurance that I was in the right place. Judy’s book was incredible. Judy’s book is powerful. As I read the book, yes, I knew the group was comprised of mainly folks with disabilities, but their action and determination, their ups and downs, could easily reflect any civil rights movement because it was just as powerful as any movement that ever came before or after. As a disability rights advocate, I will continue to promote and defend the legal and human rights of people with disabilities, in Judy’s memory. I’ll always be sad I never had the opportunity to meet Judy, but I’ll continue to see her in all the work we do.

Danielle Workman

As the communications intern for Disability Rights Iowa, I knew the very first post I would release on our platform had to include Judy Heumann. For as long as I can remember, Judy has been one my greatest role models. Her perseverance and fire are just some of her endless attributes that I strive to emulate. I have been extremely fortunate as a disabled person to have access to my world and education because of Judy’s fight. I have been inspired by Judy and the Disability Rights Movement to challenge ableism around my college campus. While presenting to faculty and staff, I have proudly worn a shirt with an image of Judy during the 504 Sit-Ins with her famous quotation: “I wanna see feisty disabled people change the world.” Judy was an incredible advocate that will never be forgotten in the disability community. I am forever thankful for Judy’s legacy and promise to be one of the many feisty disabled people who will continue her work until we achieve a truly inclusive, accessible, and equal society for the disability community.

Allie Tubbs

Years ago, one of my colleagues told me that Judy Heumann would be interested in a program we were developing.  Our program focused on using mentoring to teach disability inclusion.  I remember thinking at the time – WOW, Judy Heumann! 

As a Disability Rights Attorney, I had long considered Judy to be the fiercest of all disability advocates.  I knew of her fights to advance disability rights, as well as her successes in the signing of the 504 Rehab Act regulations, the ADA, and many other impactful achievements.  She was my advocacy role model in my early days as a disability rights attorney, and my change agent role model later in my career.   However, I never expected that I’d have an opportunity to meet Judy.

Much to my surprise, Judy took time to meet with us, to offer ideas, questions, suggestions, her support, her enthusiasm, and her perspective on how we could improve our program.  From this initial almost out of body conversation with Judy, I had the amazing fortune of continuing and deepening our conversation over the years.  Judy offered me her friendship, shared her life’s experiences with me, and offered me guidance on how to continue to advance and preserve our rights.  I remember once asking her “how can I change the world to ensure proactive disability inclusion?”   I will never forget the quick twinkle in her eyes, her big, big smile, nor her advice, “You will need to make a lot of friends.”  I took this advice to heart and made a lot of friends.  I will continue to follow Judy’s advice and make many more friends, so that we collectively can continue Judy’s work and change the world. 

I learned through the years of my friendship with Judy, that she regularly made time to offer herself and her profound wisdom to others.  Judy was the most accomplished and humble person I have ever had the pleasure of knowing.   To spend time with Judy, meant being fully present and passionately engaged in life.  Judy did not waste a minute of her life.  Her legacy, her smile and her joy will be with us always.  While I miss Judy’s smile and her joy, I am comforted by knowing that Judy made advocates out of everyone she met.  With these advocates and all my new friends, I pledge to continue Judy’s work. I pledge to not waste a minute of my life in my quest to make the world a better place for all of us.   I miss you, Judy.  Thank you for your friendship and forever enriching and changing my life.     

Catherine Johnson

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

Educational Barriers for Disabled Students

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Walking into my elementary school for the first time, I was excited beyond belief. I moved through the halls just like the big kids. However, I noticed that everyone’s eyes turned to me, not because they loved my first-day outfit, despite my cool light-up shoes, but because I had a physical disability. I quickly felt self-conscious as I realized that I was different. Nobody looked like me. I stuck out like a sore thumb as I awkwardly toddled through the hallways while wearing my long-leg braces. My peers stared at my legs rather than listening to what I had to say. I couldn’t run with them on the playground or compete in the same activities in P.E. class. The school separated me from my non-disabled peers for something I couldn’t control. I tried resisting these feelings of helplessness I experienced as I watched my peers pass me by, but I knew that I would encounter that feeling of powerlessness for the rest of my education.

I was lucky because the education system deemed me smart enough and “normal” enough to behave within the socially acceptable standards of the classroom. My disabled peers were not so lucky and were hidden away in the special education wing of the school. Middle school was where I saw a drastic divide between the disabled and abled-bodied students. My disabled peers would join our classes in the morning for a brief lesson. Then they left and nobody saw them outside of the special education classroom for the rest of the day. Their learning and experiences would have been beneficial to all of us, but the structure of schools prohibited this.

This practice of segregating disabled students from the general school population dates back to the American eugenics movement of the early 20th century. Prominent eugenicist, Dr. Henry Herbert Goddard, popularized the use of intelligence testing to identify people who he claimed to be “feebleminded.” He believed society should institutionalize feebleminded people in order to stop the disabled from procreating and protect the strength of the American gene pool. Goddard used intelligence tests to test for feeblemindedness and those he believed were feebleminded were institutionalized at the New Jersey Training School for Feeble-Minded Girls and Boys in 1908. He later advocated for these tests to be used in public schools in order to weed out disabled children from the general school population. Eugenicists like Goddard argued for the creation of special education for the explicit purpose of identifying and segregating mentally disabled children. The normalization of segregating disabled students from their abled-bodied peers perpetuates these harmful eugenic ideas into current classrooms. While one-on-one teaching can be beneficial for disabled students, the failure to integrate them into mainstream school culture is harmful for both disabled and abled-bodied students.

Through the segregation of disabled students, teachers and peers miss out on important opportunities to grow in their understanding of disability. Regardless of my willingness to discuss disability in an educational setting, teachers ignored me completely whenever their lesson briefly intersected with disability. A teacher once told me that she didn’t want to trigger me during a lesson about a disabled girl so that’s why she never called on me. I appreciated this caution and recognition, but it also prevented a real-life learning experience for myself and my peers. I remember sitting and feeling my skin crawl as a classmate ignorantly presented on a book with a disabled protagonist. He also failed to ever look at me, but I presume he had different reasons than my teacher. He simply didn’t know how to discuss disability with a disabled student. This complete lack of recognition for the educational value of the disability perspective while simultaneously treating me differently because of my disability was a constant barrier during my education.

Generally, schools either lack the resources or the willingness to accept disability and include disabled students in classrooms. As the special education students walked around the hallways, I heard snickers throughout the class. Non-disabled students jokingly called each other the “R”-word when they didn’t make the smartest decision. I attempted to correct them in vain as they had no context of how harmful that word is for the disability community. The only thing abled-bodied students knew about the special education students was that they came to empty the recycling in all of the classrooms once a week. The school’s justification for this job may have been teaching them responsibility or how to complete a weekly task. However, all this job taught abled-bodied students was that disabled students were only capable of contributing to their “normal” classroom and society by removing their recycling.

Educational barriers for disabled students are vast and different for every person. However, the eugenic ideals that lead to the creation of special education and continue to segregate classrooms today are often the most challenging. This separation of disabled students from their abled-bodied peers removes the opportunity to discuss disability and inclusion at an early age. This lack of knowledge and ability to interact with disabled peers harmfully reinforces the stigma around disability. Accepting disabled students into the classroom diversifies learning for everyone. Students can play an active role in this inclusion by asking questions regarding disability and joining or founding organizations to support disabled peers. Education is the foundation of how people learn and grow in their understanding of the world. School systems cannot ignore disability any longer otherwise disabled people will continue to be isolated and removed from mainstream society.

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.

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

by

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.