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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

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.

Changes to Iowa’s Guardianship Laws

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In the 2019 legislative session, the Iowa Legislature unanimously passed House File 610, which changes how guardianships and conservatorships in Iowa will be established and maintained. The goal of the new law is to improve protections for people who are under guardianship or are alleged to lack decision making capacity, since appointing a guardian for an adult means stripping them of some of their basic rights and freedoms. Here are a few things you should know about the new law if you are a guardian or a person who has a guardian.

New Terminology

The new law eliminates use of the term “Ward” and “Proposed ward.” It replaces “ward” with “protected person” and “proposed ward” with “respondent.”

Elimination of “Voluntary” guardianships

The old law distinguished between “voluntary” guardianships, where someone could agree that they need a guardian without a hearing, and “involuntary” guardianships where someone else assigned a guardianship through a hearing. This meant that vulnerable people could be coerced into consenting to guardianship and losing their rights without a hearing. Now, all new guardianships will require a hearing and reasons the guardianship is necessary. A person can still ask the court for a guardian, but a hearing must be held before anyone is appointed. For people who have existing voluntary guardianships that were set up before changes to the law, their guardianships will continue but may be subject to additional requirements.

Initial care plans

The new law aims to get guardians to think in detail about what they plan to do for the protected person, and make a plan. This means guardians have to give the court an initial care plan detailing how they will use their decision making authority and what their plan is for the protected person. In response to some confusion about how existing guardianships would be affected, the Supreme Court issued an order stating that, “Guardians […] have continuing authority to perform acts concerning the protected person that were authorized prior to January 1, 2020 through the date of the guardian’s previously scheduled annual report.” The Supreme Court has also provided an Initial Care Plan form that is mandatory for guardians who are filing reports without an attorney. Currently serving guardians should file this initial care plan with their next annual report.

Changes to annual reporting requirements

Under the old law courts could, and frequently did, set the reporting period for guardianships at three or five years, or in some cases waive reporting requirements entirely. This led to a lack of reliable records of actions taken by the guardian on behalf of the protected person, which can be a problem if there were ever any questions about the guardianship.. The new law requires annual reports on every guardianship, meaning that waivers or extended reporting periods are no longer permitted. Existing guardians must now file reports annually, but it is not clear whether those who previously had a waiver should file before the end of the year, or just begin with their next scheduled report. A guardian in this situation can call the clerk of court in their guardianship’s county and ask how the court would like them to proceed. As with the initial care plan, the Supreme Court also issued a form for annual reporting.

Background checks

As of January 1, 2020, all new prospective guardians will have to undergo a background check for criminal history, sex offenses, and abuse registries. Courts can review the results of background checks when deciding whether to appoint a guardian – there is nothing that automatically disqualifies a person from serving. This requirement does not affect guardians who were appointed prior to January 1, 2020.

This information is not legal advice. Individuals should contact an attorney for advice on their specific situation before proceeding.

Caucus Access for All

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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.

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.