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Giving Tuesday with DRI

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Dear Friends,

I reach out to share my gratitude for your past support of our work and ask for your consideration again this year. Last year I shared a celebratory message of Disability Rights Iowa’s 40th Anniversary.  This year, I am happy to be able to build on that and share a message of DRI’s focused and steadfast commitment to disability rights advocacy.

Right now, DRI needs your help. As you may know, our agency is federally funded, meaning that the funding we use to provide vital advocacy for Iowan’s like you is given to us by Congress through various Protection and Advocacy grants. Currently, DRI’s funding is uncertain as Congress decides on the appropriate amount of funding for our agency. The funding we receive directly impacts the amount of advocacy we are able to provide on your behalf. 

This uncertainty has caused us to put a pause on reviewing cases under two of our Federal Protection and Advocacy Programs already. Without this funding, DRI is unable to accept new cases under these programs.   I have included the following video to better share how funding delays and lack of funding impacts DRI’s advocacy and Iowans rights.  (Emily’s video)

The silver lining is the strength of DRI through uncertain times like these. I am proud to share that our advocacy on behalf of Iowans with disabilities in 2025 included;

  • Advocating against cuts to Medicaid.
  • Increasing Access to Medicaid Long-Term Services and Supports.
  • Keeping students with behavioral disabilities steadily enrolled and advancing in school.

DRI has been Iowa’s Protection and Advocacy Agency for 41 years. With your support DRI will continue to advance disability rights and to protect Iowans with disabilities for many more years to come. Please consider donating to our Giving Tuesday campaign, knowing it directly benefits Iowans in need.  If you are not able to donate financially, here are other meaningful ways you can help DRI. 

Share this message, even if no one you know can donate or act. Sharing our message not only gets it seen by more people but also gives others an opportunity to donate if they’re not already on our mailing list.

Follow us on social media. We are constantly posting updates about our funding and important disability rights issues and news – every interaction ensures that the people who need us can find us.

Contact Congress. Congress is still making decisions – you can let your representatives know how important our services are to you and to your neighbors by filling out this form below. BUTTON

I am so deeply grateful for your continued support that helps to advance the civil and human rights of thousands of Iowans with disabilities. DRI is an organization that exists to serve you. Your support is vital to our ability to achieve our mission, our vision of growth and to meet the evolving needs of Iowans with disabilities.  Donations and acts of support like yours directly contribute to our mission; and allow us to grow our disability rights advocacy and resources for Iowa’s Disability Community. 

You can continue your support of Disability Rights Iowa by sending a check to our office at 606 Walnut St., Suite 2220, Des Moines, IA 50309, or you can visit our website  to make a payment online and learn about the various ways you can make a gift that supports DRI.

Disability Rights Iowa is a 501(c) (3) non-profit organization (Tax ID: 42-1235407), any financial contribution is tax deductible to the extent allowed by law.

Thank you for your commitment to disability rights and your commitment to Disability Rights Iowa.

With Gratitude,
Catherine E. Johnson
Executive Director
Disability Rights Iowa

We Are Proud To Celebrate 40 Years Of Creating Change

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“40” is written with the scales of justice inside of the zero. “1984-2024” is written below the forty. This is circled by text that reads “Disability Rights Iowa” underneath this circle is text that reads “forty years of creating change”

In this blog, our Executive Director, Catherine Johnson discusses our 40th Anniversary. DRI has been able to protect and advance the rights of Iowans with disabilities for 40 years. The impact of this work can only be measured by the support Iowans have shown us. We can’t wait to continue serving you for the next 40 years!

This blog includes and introduction, language accessibility notice, full blog, and plain language summary of the blog. Next is the language accessibility notice. This notice can be dismissed once you are done with it.

Language Accessibility

Note:  DRI writes its content to be accessible to Iowans with disabilities. DRI’s content allows individuals to find, understand and use the information they need.

DRI uses accessible language in its content when possible. DRI’s content sometimes requires writing at a high reading level. This is because of the legal complexity of DRI’s work. For higher reading content, DRI will include a Plain Language Summary. The Plain Language Summary will include all key points from the original content. The Summaries will be written at the lowest reading level possible. Links to more information about reading accessibility and a plain language summary of this article are below this sentence.

Learn more about reading level accessibility at this link.
This blog is written at a 14th Grade Reading Level. For a Plain Language Summary written at a 7th Grade Reading Level, please follow this link.

From Catherine E. Johnson, Executive Director

Disability Rights Iowa proudly serves as Iowa’s Protection and Advocacy Center.  For Forty years Disability Rights Iowa (DRI) has removed disability barriers, preserved disability rights, provided hope, and created change for Iowans with disabilities.   DRI’s advocacy is guided by a vision of creating a changed world where people with disabilities are valued and fully included in their communities, their workplaces, and their schools, where they have equitable access to all opportunities and make their own decisions.   The foundation of DRI’s vision relies upon three principles of Advocating for Justice, Advancing human and legal rights, and Protecting Iowans with Disabilities.  Each principal represent advocacy on disability rights issues significant to the Disability Community.   I am excited to share an overview of some of the advocacy DRI has accomplished in each of these principles.  

Principle I:  Advocating for Justice:

By advocating for justice DRI has changed the landscape of disability justice in our state. DRI has led the charge in educating policy makers on the impact of proposed policies on Iowans with disabilities, has provided self-advocacy and education on disability rights to Iowa’s Disability Community, and has worked to ensure voting is fully accessible for Iowans with disabilities.  In 2024, our policy advocacy team has provided education to policymakers on the impact of proposed legislation on Iowans with Disabilities. DRI provided education on the impact of several pieces of legislation, ranging from Special Education, Voting, Employment, and Home and Community Based Services (HCBS).  

Our team of advocates continues to assist Iowans every day with their individual needs – 1300 calls were made in the first six months of 2024 alone.  Advocates meet with hundreds of individuals to provide self-advocacy assistance on how Iowans with disabilities can advance and protect their own rights.   DRI is an active participant in all 99 counties in Iowa.  DRI travels to all 99 counties to provide outreach, training, and education to the community. DRI has a continued presence on our partner agencies – serving on councils and boards that reflect the needs of individuals with disabilities.

DRI Team members frequently give presentations on disability rights topics, Guardianships and Conservatorships, Benefits Planning, Special Education, and Employment. DRI shares our disability rights expertise through annual disability rights conferences, serving as speakers, sharing our flyers, and answering questions between sessions. DRI also hosts disability rights events, ensuring that each event is proactively accessible. 

Principle II:  Advancing the human and legal rights of Iowans with Disabilities

Through advancing the human and legal rights of Iowans DRI has advanced significant disability rights issues, individual and systems issues and made real change in the lives of Iowans. Our work is organized under three main topic Areas of Focus 1)  Accountability of Systems – keeping Iowans safe from abuse and neglect, 2) Civil Rights – ensuring all Iowans with Disability possess the Civil and Human Rights afforded to all, and 3) Community Inclusion – advocating for Iowans with Disabilities live, work, and learn in the community of their choice with necessary support and services.  Within these Areas of Focus, DRI provides impactful advocacy on disability rights issues, such as assisting Iowans with disabilities request workplace accommodations, live in the community of their choice with necessary Medicaid long-term services and supports, keeping  students with behavioral and emotional disabilities in school all day, ensuring Iowans with disabilities have equal access to Government Services and Programs and places of Public Accommodation among other disability rights issues.   

For the past forty years DRI has sought to create change through both individual and systems advocacy.   DRI provides assistance to individuals on their specific disability rights issue.  DRI also seeks to provide relief through systems advocacy to all Iowans with disabilities impacted by a similar issue or barriers.   DRI seeks to provide assistance to the largest number of Iowans with disabilities possible.  DRI sought input from the Disability Community and stakeholders on  shifting our advocacy more toward systemic advocacy.  The overwhelming response from our community was that individual advocacy can only get us so far without addressing the root cause of the issue. This shift has advanced our work.  This shift led DRI to identify and address significant systems disability rights issues impacting our community.  It directly led to our agency reviewing and updating our mission, vision, core values, and DEIB statement. We are proud of these updates because they were accomplished with our community and with a strong vision for creating change in the lives of Iowans with disabilities. 

Principle III:  Protecting Iowans with Disabilities

The National Protection and Advocacy System was created to protect individuals with disabilities from abuse and neglect.  Protecting Iowans with disabilities is cornerstone in all of DRI’s advocacy.  DRI monitors facilities throughout the state to ensure that Iowans with disabilities live and receive services without being abused and/or neglected.  DRI will continue to provide this core function of monitoring and investigations for the next forty years.  DRI partners with multiple agencies to advance this principle. 

DRI has been and will continue to be a beacon of hope for Iowans with Disabilities. Our work has always been guided by the needs of our community. Whether we are fighting for the rights of an individual to live within the community of their choice, educating others about the implications of any topic within the scope of disability rights, or advocating for the protections of individuals with disabilities under the law DRI is here to serve Iowans with Disabilities.  At DRI, we are more than a legal nonprofit. We are a community of friends, family, neighbors, co-workers, classmates, and partners in advocacy and change for Iowans with Disabilities. Your continued support allows us continue moving closer to our vision of a changed world where people with disabilities are valued and fully included in their communities, their workplaces, and their schools, where they have equitable access to all opportunities and make their own decisions.

Thank you, Iowa, for the last forty years!

DRI’s work has only begun.  We are ready for our next forty years of Creating Change.  We invite you to join us!  

Plain Language Summary

For 40 years Disability Rights Iowa (DRI) has served Iowans with disabilities. Team members past and present are proud of serving this community. Guiding this work are the principles of

  • Advocating for Justice,
  • Advancing human and legal rights, and
  • protecting Iowans with Disabilities.

Each principle builds the world we wish to be a part of. These principles are our mission.

Advocating for Justice

We have changed the landscape of disability justice in our state.

DRI has

  • led the charge in educating policy and lawmakers,
  • developed a comprehensive plan for self-advocacy,
  • interacted with and educated the community, and
  • changed voting rights for the better.

This year, our team has

  • Started a Policy Advocacy team
  • educated policymakers
  • testified in legislative hearings
  • taken over 1300 calls from Iowans
  • educated Iowans on self-advocacy
  • given referrals and resources to Iowans within their communities
  • participated in outreach events across the four corners of Iowa
  • served on councils and boards that serve Iowans with disabilities
  • presented at over 20 different organizations and conferences
  • hosted events and honored disability awareness months, weeks, and days
  • empowered Iowans with disabilities to vote

The work doesn’t stop with self-advocacy, it continues on to legal advocacy.

Through advancing the human and legal rights of Iowans we have made real change in the lives of Iowans. Our case work falls under three main topic areas of

  • Accountability of Systems – keeping Iowans safe from abuse and neglect,
  • Civil Rights – ensuring all Iowans with Disability possess the Civil and Human Rights afforded to all, and
  • Community Inclusion – advocating for Iowans with Disabilities live, work, and learn in the community of their choice with necessary support and services.

DRI has mainly worked on individual cases of disability discrimination. We found that through review of the work we’ve been doing, that many of these cases boil down to the same issue. With community guidance we shifted to add systemic advocacy to our work.

This shift has advanced the work we do in the office every day. Because of this, we reviewed and updated our

  • mission,
  • vision,
  • core values, and
  • DEIB statement.

We are proud of these updates. They include every Iowan with a disability and redefined disability and break down stigma. With them we continue to be leaders in

  • disability advocacy and
  • the Disability Rights Movement.

Protecting Iowans with disabilities

is what we have always done and what we will continue to do for the next forty years of our agency. DRI has been and will continue to be a beacon of hope for Iowans with Disabilities. Our work has always been guided by the needs and wants of our community. Whether we are

  • fighting for the rights of an individual to live within the community of their choice,
  • educating others about the implications of any topic within the scope of disability rights, or
  • advocating for the protections of individuals with disabilities under the law –

DRI is here to serve.

At DRI, we are more than a legal nonprofit. We are.

  • a community
  • friends,
  • family,
  • neighbors,
  • co-workers,
  • classmates, and
  • partners in advocacy and change for Iowans with Disabilities.

Your continued support allows us to strive for a changed world where people with disabilities are valued and fully included in their communities, their workplaces, and their schools, where they have equitable access to all opportunities and make their own decisions. So, thank you, Iowa, for the last forty years – and get ready for the next forty years of Creating Change.

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

Community

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by: Allie Tubbs and Katelynn Schultz

A large group of people congregate in a conference room all facing a speaker. The speakers back is to the camera.

Whether you proudly claim your disability or are still exploring your identity, the disability community is one of the most inclusive and encouraging communities. 

Community is personal strength – where many individuals find purpose, find safety, find connection. Community to many is like a nice hug, a warm bath, a squeeze of a stuffed animal, the paw of a pet, or the gurgle of water running outside. Losing a community can feel like losing a part of our identity. Gaining a community? That can be the validation of self many people are desperately searching for. 

Finding your community can be very difficult. There are more than 1 billion people with disabilities in the world. These 1 billion people include people ranging in age, ethnicity, language, and numerous other identities. These people might not be able to travel due to their disability. These people might not verbally communicate with each other. These people might not intellectually approach a problem in the same way. This diverse group of people combine to form one of the strongest advocacy communities by meeting in the most accessible place where they hold the freedom to share their perspectives: social media. 

There are endless groups to join on numerous different platforms. How do you pick the best social media community for you?

I ask myself: “Do I want to be in a group focused on my love of books, my local neighborhood, my passions, my favorite dogs, or … do I want to be in a group of people who understand my disability?”At first, it feels like an automatic no. No, I do not want my disability to be my defining characteristic. What disability would I even choose? Disability is so widely varied between individuals – how would I even know how to carry a conversation with anyone else like me? They might have different experiences than me. They still might not understand or like me. Wouldn’t it be worse if the people who are supposed to be similar to me rejected me and my experiences? 

These questions all raced through my mind as I dipped a very hesitant toe into my exploration of social media. But I joined the groups anyway. All of them. Based on my high school graduating class, based on my college class, based on the community I live in, based on my dogs, and based on- yes – my disability (each of them). For a while, each of these groups served to support a portion of my identity. But I left each group as they started to feel negative or isolating. 

I left my high school group because we all grew apart.

I left my college class group because I was always friends with people outside of my class.

I left the neighborhood group because I moved.

I left the dog groups because it felt too judgemental.

But I stay in my disability groups. 

The social media groups teach me about my disability: treatments I can do at home, various techniques and tools to lessen my pain, and testimonials about what to ask for when visiting the doctor. They point me to which doctors listen and which ones gloss over disability. They safeguard me from the traumatic doctor’s appointments where the doctor goes straight to asking, “Have you tried exercising?” I find people who understand when I cancel plans due to pain or simply being out of spoons for the day. They understand why I skim articles too fast to comprehend them. They sometimes even understand me better than I do myself. My community members talk about their experiences, which sheds light on why I act the way I do. In the most welcoming and unexpected way, I found community.

On social media, the disability community isn’t concerned about perfect people with perfect lives. Rather, they unapologetically tell the truth. They tell their realities of having a disability and in doing so, I have finally found a place where I can do the same. Ever since joining this incredible online community, I’ve since expanded my participation and kept up with people who not only have my specific disabilities or assumed diagnoses – but people with other related or non-related disabilities. I relate, I learn, I share comedy, I belong in a space of sharing and caring. My initial fears of being excluded and isolated as I have in every other community before have long been forgotten. In finding this wonderful online space filled with hardworking, ingenious, and empathetic people with disabilities, I have not only found my community, but my community has helped me find myself.

Another Year of Long-COVID and New Information

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by: Danielle Workman

This October, we celebrate National Disability Employment Awareness Month (NDEAM)! This month is focused on recognizing and celebrating the contributions of workers with disabilities. It aims to highlight and recognize the unique and valuable contributions that workers with disabilities bring to the workplace. Additionally, it promotes inclusive employment policies and practices.

This year, Disability Rights Iowa is focused on providing education on a newly recognized disability, increasing exponentially:  Long COVID. Individuals experience long-term manifestations from COVID-19 in a variety of ways.   )   , individuals with Long COVID may experience difficulties in work, education and community engagement.    

Long COVID (or Post-COVID as referred to by the Centers for Disease Control ‘CDC’) is a broad title for people who experience a wide range of ongoing health problems as a result of having COVID-19. Their symptoms may last for weeks, months, or longer. Long COVID can affect anyone regardless of age, gender, race, or health status. Long COVID is NOT a formal diagnosis.   People who they think may be experiencing Long COVID should work with the primary care physician to record and monitor their symptoms.

Symptoms of Long COVID have varied greatly from person to person. Examples of symptoms that have been reported by people experiencing Long COVID include*:

General Symptoms*

• Tiredness/fatigue 

• Symptoms get worse after physical or mental effort 

• Fever 

 Other Symptoms*

• Joint or muscle pain 

• Rash 

• Changes in menstrual cycles  

Respiratory/Heart Symptoms* 

• Difficulty breathing or shortness of breath 

• Cough 

• Chest Pain 

• Fast-beating or pounding heart  

Neurological Symptoms* 

• “Brain Fog” – difficulty thinking or concentrating  

• Headache 

• Sleep Problems 

• Dizziness/Lightheadedness when you stand up 

• Pins-and-needle feelings 

• Change in smell or taste 

• Depression or Anxiety  

Digestive Symptoms* 

• Diarrhea 

• Stomach Pain 

*Information gathered from www.cdc.gov, this list is not all-inclusive, consult with your doctor about your symptoms to determine if you may be experiencing Long COVID.

 For many people experiencing LONG COVID, the persisting symptoms are physically, mentally, and emotionally draining. These long term symptoms may substantially limit a major life activities.  .

Long COVID is recognized as a disability under the Americans with Disabilities Act (ADA).

As we celebrate NDEAM it is necessary to examine how Long COVID has impacted people in the workplace. Last year, Catherine Johnson welcomed people with Long COVID into the Disability Community. The ADA defines a disability as, “having a physical or mental impairment that substantially limits a major life activity.” But, what is a major life activity?

A major life activity is anything that you do on a daily basis in order to live. Examples include: hearing, seeing, speaking, walking, breathing, performing manual tasks, caring for oneself, learning, or working. This list is extensive because having one or more disabilities is not a singular experience for anyone. Even people who live with the same disability experience a different set of symptoms. Thus the ADA has recognized that disabilities are unique and call for unique modifications so that all Americans are entitled to a fulfilling and happy life.

If you are experiencing Long COVID, you are entitled to protections under the ADA. This means that if you need an accommodation at work to perform your job duties, you are entitled to request an accommodations to address the difficulties you are experiencing in performing your job duties.  .    Here are three examples of accommodations for Long-COVID.

Example 1: Taylor had COVID-19 two months ago. While most of Taylor’s symptoms eventually went away, they find they are not feeling like themselves since then. Taylor experiences brain fog at work. Taylor struggles to read and respond to emails every morning or pay attention during staff meetings. Taylor is starting to fall behind at work.

Possible Solutions: Taylor can work with their human resource specialist to request some reasonable accommodations such as: using noise cancelation head phones that eliminate office place distractions. Taylor might also request period of time on their calendar o work without interruptions, such as turning off phone and email notifications and keeping a closed door.

Example 2: Sam had COVID-19 a year ago. Sam used to be very active and engaged in physical activity several times per week. Since having COVID-19, Sam has noticed they get winded easily walking up stairs and has to take short breaks walking from a parking lot into a store. Sam works in a multi-level office and struggles to get around in a timely manner.

            Possible Solutions: Sam can work with their accommodations specialist to request reasonable accommodations such as: moving meetings to an easier space for Sam to travel to, using a computer/web-based platform to attend meetings being held on different levels, having equipment such as printers, mail stations, etc. be located in close proximity to their work space (or moving Sam’s workspace closer to shared equipment), or allowing Sam more time between meetings to accommodate the need for extra travel time and proper rest.

These examples are just the start. If you are having difficulty performing your job duties due to experiencing Long COVID, you have the right to request reasonable accommodations. The Job Accommodation Network (JAN) has an extensive list of symptoms and reasonable accommodations related to COVID-19.

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