A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

Expecting the Best From Me

/in /by Pam Katz

By Nathaniel Lentz

A young man squats, posing with his dog and putting his hand on its head. He is smiling and there are evergreen trees behind them.Throughout my life there was one phrase that was ingrained in my brain: expect the best from myself. I always believed if there was something I really wanted to do, that I should not let my disabilities stop me. No matter how challenging or difficult something might be, I would work my hardest to succeed.

It started when I was very young. My parents treated me like any other child. They didn’t make things easier for me, but they also realized that I would need extra help. They would work with my public school teachers to make sure I had the support I needed to pass my classes. Sometimes my teachers would try to make things easier for me because they thought regular class assignments would be too hard. That did not sit well with my parents.

I remember a meeting with my mom and my sixth-grade teachers.  The teachers recommended that I sign up for a particular class because it did not require much writing. My mom strongly disagreed. She said more writing was what I needed, so I was assigned a class where the students had to write a lot, and I learned how to write.

From my elementary classes though the end of high school, I would study a lot more than most students. I would often spend weekends with my grandma. She would tell me that we could go to Taco Bell after I finished my homework. When I would wake up on Saturday morning, there would be a pile of practice tests and assignments that I had to finish before I could get some tacos.

When I was a senior in high school, I was interviewed by Disability Rights Wisconsin for a position speaking to high school parents and teachers about transitioning from high school to college or job training. That first engagement led to many more speeches advocating for people with disabilities at the local, state, and even the national levels.

My parents made sure that I took college prep classes, even though because of my learning disabilities, teachers thought I would never make it in college. But I had learned what I needed to succeed: study until I understood the material. A lot of my roommates would spend their weekends at parties or in bars. I spent my weekends in the library.

A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

Working on my college degree gave me the confidence to advocate for myself. If I saw that a professor would not work well with me, I would change to another. The same applied to tutors who were unhelpful. I also developed strategies that were somewhat unorthodox to help me learn the information at a fast pace.

Another way I advocated for myself in college was with living arrangements. If I felt my prospective roommates would make it harder for me to study, or who would ridicule me because of my disabilities, I would schedule a meeting with the Housing Director, and she would find a dorm or a room where my roommates would be respectful.

Because I advocated for myself, my college experience was the best. I had the right support, the right accommodations, the best professors a student could ask for. That is how I earned my bachelor’s degree.

Because I had my bachelor’s degree and with my experience as a public speaker, I was appointed to a position on the Wisconsin Board for People with Developmental Disabilities. Before my eight-year tenure on the board had ended, I had served on numerous committees, including the Executive Committee, and I was the Chair of the Nominating Committee.

Since then, I have been appointed to the Living Well grant. I was also hired by People First Wisconsin as an Outreach Advocate and selected to be an officer on the National Council of Self Advocates.

In my work for the Living Well Grant, I reach out to people with intellectual and developmental disabilities to ask about their experiences with the Safe and Free Curriculum, a program created by the Living Well staff to help people learn about self-advocacy, how to reach personal goals, and how to live independently. I also assist the staff in writing follow up questions, as well as working on other projects.

As an Outreach Advocate for People First Wisconsin, I am facilitating meetings, reaching out to organizations for our Advocacy Information Discussion (A.I.D.) meetings, taking notes during our collaborative meetings, working on video projects, and assisting with the organization’s website.

My duties as a National Council of Self Advocates Officer deal with public policy at the national level. I work on documents about public policy, make recommendations, and serve on the Technology Coalition. I have been advocating for the public policy documents to be translated into plain language or accompanied by visual aids to make them more accessible to people who would be unable to understand the policies in their current form.

My main goal in working with these organizations is to help people with intellectual and developmental disabilities to learn what their rights are and how to advocate for what they need, so they can build a good life for themselves just like I have!

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Close up of the U.S. Supreme Court, focused on the pillars, and doorway.

Amicus Brief Filed in U.S. Supreme Court Case Emphasizes Harms to People With Disabilities

/in /by The Arc

WASHINGTON, DC – Six leading disability advocacy organizations, with the support of Kellogg Hansen, have filed a “friend-of-the-court” brief in the U.S. Supreme Court in support of the estate of Gorgi Talevski, who alleges that the Health and Hospital Corporation of Marion County, Indiana (HHC) abused and neglected him while in a nursing home. The amicus brief explains why it is important that individuals, particularly those with disabilities, have the ability to sue state and local governments when their civil rights are violated under Medicaid and other public programs. The case, Health and Hospital Corporation of Marion County, Indiana v. Talevski, is scheduled to be heard on November 8, 2022.

The amicus brief focuses focuses on the harmful impact the case will have on people with disabilities, who have long faced pervasive discriminatory treatment within American society. People with disabilities and their families have relied on lawsuits to enforce Medicaid’s antidiscrimination protections, including the landmark Olmstead v. L.C. case. If providers of Medicaid services abuse or mistreat beneficiaries or take away or deny their benefits, private lawsuits – regularly brought by The Arc and its partners – are often the only way to hold government entities accountable and ensure people get the life-saving therapies and everyday living support services they need. Many of these lawsuits will no longer be possible if the Court rules in favor of HHC. Full access to Medicaid services and the right to enforce these services are crucial to achieving community integration for people with disabilities. The brief urges the Court to reaffirm the private right of action to enforce Medicaid guarantees and disability rights.

“This case is a large-scale assault on disability rights around the country,” said Peter Berns, CEO of The Arc of the United States. “Medicaid is the primary source of healthcare for people with intellectual or developmental disabilities, the vast majority of whom want to live with dignity in their homes and communities. Protecting their right to private action when such rights are violated would ensure they aren’t unnecessarily institutionalized and prevent the unraveling of antidiscrimination progress set forth by the ADA for over 30 years.”

“The Supreme Court has signaled that it may strike another blow against civil rights in this case,” said Ira Burnim, Legal Director of the Bazelon Center for Mental Health Law. “An expansive ruling could put at risk the ability of individuals to seek relief in federal court for violations of key civil rights statutes prohibiting discrimination based on sex, race, national origin, or disability.”

“Medicaid covers personal attendants and other in-home services and supports that disabled people need to live in the community and participate in society. Enforcement is a critical right,” said Claudia Center, Legal Director of Disability Rights Education and Defense Fund.

“Congress intended that people with disabilities have the right to enforce Medicaid, just as they do Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. The disability community has used this private right of action to enforce vital civil rights protections repeatedly,” said Maria Town, American Association of People with Disabilities President and CEO. “Any decision from the Supreme Court that does not recognize this right would go against Congress’ wishes, decades of legal precedent, and ultimately, put at serious risk the healthcare, community integration, and civil rights that people with disabilities have long fought to secure.”

In Health and Hospital Corporation of Marion County, Indiana v. Talevski, HHC is appealing a ruling by the Seventh Circuit Court of Appeals that Mr. Talevski and his family could sue to enforce his rights under the Nursing Home Reform Act provisions of Medicaid. For 50 years, the U.S. Supreme Court has recognized that people can sue if their rights are violated under safety net programs. The inability to pursue legal recourse will affect millions of people who rely on Medicaid, the Supplemental Nutrition Assistance Program (SNAP), Women, Infants, and Children (WIC), the Children’s Health Insurance Program (CHIP), Temporary Assistance to Needy Families (TANF), and more.

The amici are also concerned that a broad ruling in favor of HHC may undercut individuals’ rights to sue to enforce Title IX of the Education Amendments of 1972 (prohibiting discrimination based on sex), Title VI of the Civil Rights Act (prohibiting discrimination based on race, color, or national origin), and Section 504 of the Rehabilitation Act (prohibiting disability discrimination).

Major health organizations, legal experts, and scholars also uphold the importance of private suits under Medicaid and other federal statutes. Over twenty other amicus briefs have been submitted in support of the defendant, Gorgi Talevski, who is being represented by Ivanka Talevski in his death.

 

 

Media Contacts: 

Jackie Dilworth, The Arc of the United States, dilworth@thearcwebdev.wpengine.com

Jalyn Radziminski, The Bazelon Center, jalynr@bazelon.org

Claudia Center, The Disability Rights Education & Defense Fund, ccenter@dredf.org

Rachita Singh, The American Association of People with Disabilities, rsingh@aapd.com

Steven Schwartz, The Center for Public Representation, sschwartz@cpr-ma.org

 

About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of 600+ chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

About The Bazelon Center: Since 1972, the Judge David L. Bazelon Center for Mental Health Law has advocated for the civil rights, full inclusion and equality of adults and children with mental disabilities. We envision a society where Americans with mental illness or developmental disabilities live with autonomy, dignity, and opportunity in welcoming communities, supported by law, policy, and practices that help them reach their full potential. The Bazelon Center accomplishes its goals through a unique combination of litigation, public policy advocacy, coalition building and leadership, public education, media outreach and technical assistance.

About The Disability Rights Education & Defense Fund: The Disability Rights Education & Defense Fund (DREDF) is a national, nonprofit law and policy center led by people with disabilities and dedicated to advancing and protecting the civil and human rights of disabled people. As a Parent Training and Information Center (PTI) funded by the US Department of Education, DREDF serves families of children with disabilities and disabled young adults in 33 California counties.

About The American Association of People with Disabilities: The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. As a national cross-disability rights organization, AAPD advocates for full civil rights for the over 61 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. To learn more, visit the AAPD Web site: www.aapd.com

About The Center for Public Representation: The Center for Public Representation (CPR) is a national public interest advocacy organization assists people with disabilities to control their own lives, to make their own decisions, and to fully participate in their communities. CPR has litigated numerous cases to ensure that people with disabilities can leave nursing facilities and other segregated institutions, and live productive lives in the community.

A woman standing on a deck with a park int h

For Lauren, Increasing the SSI Asset Limit Makes Her Dreams More Achievable

/in /by The Arc

Lauren has a bright future. She graduated from her Indiana high school at the height of the COVID-19 pandemic, but she didn’t let that stop her from advancing her education. Currently, she is working towards an associate degree in animal science, her long-time passion. With only one class remaining, she is set to get her degree this year.

Currently, Lauren is living at home with her parents while she works part-time at a doggy daycare. As she has watched her siblings move out and settle into adult life, she has also been making plans of her own. She dreams of pursuing a veterinary technician degree, working in a veterinary clinic, living in her own home, having her own car to get around her rural Indiana community, spending time in nature, and even going on the occasional vacation.

Lauren’s plans are not uncommon, but they are difficult to achieve right now. Lauren receives Supplemental Security Insurance (SSI). SSI currently provides critical support to Lauren and nearly 8 million other adults and children with disabilities and older Americans. SSI helps people pay for their homes and food to eat. In most states, receiving SSI also means that people can get Medicaid. This is important because only Medicaid provides the services and supports many people with disabilities rely on.

Right now, outdated rules prevent people who get SSI from saving money, forcing them to live in poverty. Single people like Lauren who get SSI can only have $2,000 in assets and married people can only have $3,000 combined. Assets include money in bank accounts, retirement accounts, and other savings. In practice, because bank accounts often require a minimum balance, there is less money that can be used if needed. It also means that Lauren cannot save for a down payment for a home or a reliable car.

Lauren wants to be independent and achieve her goals. Even though she is young, she wants to plan for her retirement and make sure she has enough money for the future. The current SSI asset limit causes constant challenges and makes saving for everyday life and achieving her dreams feel out of reach.

A woman with long brown hair stands on a deck overlooking grass down below. She is wearing a grey t-shirt and jeans.“I have to constantly monitor the account to make sure I am not working too much so that I can keep all my benefits. The support is what makes it possible for me to work, but if I do work then I could lose the support. It makes it impossible to improve and try new things. I have not gone over the limit, but the low level does make it impossible to be responsible and save for larger purchases like a car or home of my own. I am stuck as a renter or with poor-quality transportation, and I am not able to plan for the future, like retirement—things that other people my age are able to do.”

Congress is currently considering a bill that would raise the amount of savings a person on SSI could keep. This is huge. It would be the first time in over 30 years that this limit would change. It would raise the limit from $2,000 to $10,000 for single people like Lauren, and it would increase from $3,000 to $20,000 for married couples who get SSI.

For Lauren, changing the asset limit would create new possibilities to enact her plans and achieve her dreams. She could save for a car to get around her rural community and set aside a little nest egg in case something unexpected happens.

 

Get Involved

Help Lauren and the 8 million others nationwide on SSI save for their future.

Tell your members of Congress to raise the savings limit today!

 

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Congress Fails to Block Use of Shock on Residents with Disabilities at Judge Rotenberg Center

/in /by The Arc

Washington, DC – Medical and disability leaders have worked for years to ban the use of electric shock devices for behavior modification on people with intellectual and developmental disabilities (IDD). The brutal treatment is widely recognized as cruel, harmful, and ineffective. Yet the Judge Rotenberg Center (JRC), an institution in Massachusetts for people with IDD, still subjects its residents to this extreme practice. We prevailed in 2020, but the Food and Drug Administration’s ban of the use of the device was overturned on a technicality just one year later. The Arc and our advocates have been asking Congress to put an end to this barbaric treatment in the 2022 FDA User Fee Package – and they have failed to stand up for the basic human rights of people with disabilities.

Today, Senate and House leaders announced they are moving a bill forward to fund the FDA for another five years without the ban. Initial versions of this bill that passed the House and the Senate HELP Committee with bipartisan support included the ban on the shock device. The Arc of the United States, its 600+ chapter network, and people with IDD and their families are devastated by this omission.

“This practice is torturous and a violation of basic civil rights. We will continue fighting for justice for JRC’s residents by working with our partners to get a ban into the end-of-year spending package and ensuring every single representative prioritizes the health and safety of people with intellectual and developmental disabilities,” said Peter Berns, CEO, The Arc.

A man smiles softly, wearing a black shirt. His head is shaved and he has a short goatee.

I Turn My Suffering Into Art To Tell Others How Far I’ve Come, so They Know They Can Do It Too

/in /by Pam Katz

By Poet and Speaker Russell Lehmann

A man smiles softly, wearing a black shirt. His head is shaved and he has a short goatee. I grew up in the Seattle area. I wasn’t diagnosed [with autism] until I was 12, even though I struggled from the day I came out of my mother’s womb because we couldn’t find a competent doctor. I was struggling with severe OCD and panic attacks that consumed my life. I was that “weird” kid in the corner of the classroom with his hood on, not making any eye contact, or even speaking. I was completely closed off, a prisoner inside my own body. When I finally got my diagnosis, suddenly I wasn’t just that weird kid anymore, I was the weird autistic kid. A word that, back in 2003, was very misunderstood and oftentimes resulted in either pity or unconscious spite, for my behavior, on face value, made it seem like I was lazy and disinterested in life. If only they could hear my heart’s silent cries for help.

Suffice to say, this diagnosis, although welcomed, made me even more of an outcast when it came to my interactions, and lack thereof, with society—there’s a lot of stigma. I eventually had to drop out of public school due to my struggles which quite rapidly dissolved all bridges to the outside world, and from 12 to 27 I was completely isolated—my mom would bring home my work and take it back to school for me throughout middle school and in high school, I stayed home and took online classes to receive my GED. I missed out on the entirety of my adolescence, teenage years, and transition into an adult. I didn’t know what it was like to have friends or to even be around others outside of my immediate family. Isolation can do strange things to the mind, the repercussions of which I still deal with to this day.

In my early 20s, I began dabbling in poetry, and this art soon became the friend and companion I had always yearned for. To be able to express my pain, frustrations, dread, sadness, and ongoing struggles was extremely liberating, and to create a piece of art, a poem, out of my suffering, well…there’s not much that was, and is, more cathartic and healing.

In my mid-20s, I self-published a book of poetry that was met with much appreciation for the rawness and transparency it portrayed into my lived experience. The book was featured in the LA Times, earned an Honorable Mention at the 2012 NY Book Festival, and won the award for Literary Excellency at the 2013 International Autistic People’s Awards in Vancouver, Canada.

A few years later, I decided to try and take my advocacy efforts to the next level. I was 25, on disability benefits with no job, living with my parents, and hadn’t had friends in almost 14 years. I knew I had a lot to give and not much to lose, so I set my sights on becoming a public speaker to speak up for those who are pushed to the margins of society like me.

Things took off quite rapidly, as I had a natural talent for connecting with others through topics of vulnerability, a positive by-product of spending half my life alone and looking inward into my painful emotions. Some call me a self-advocate, but I’m not doing this for me. I am doing this so that others have it a bit easier. I shed hindsight and insight to generate foresight for others and perform spoken word poetry in my presentations to offer a more dynamic look into the world of autism, mental health, and the suffering of existence, for it is my belief that art would cease to exist it if wasn’t for the universal commonality of human suffering.

I’ve come so far in life that I feel as if I have lived multiple lives. I had so many dreams growing up, but my struggles got in the way and squashed them, along with an insincere societal environment that put the final nail in the coffin of what I had hoped for my future.

In July of 2021, I decided to take a huge risk and move to Los Angeles by myself to start a new chapter of personal and professional growth, without knowing anyone. If there is one thing my seclusion has always brought me, it was time alone with my heart; time I did not, and still do not, take for granted, for the heart knows the way, and I always listen to mine.

I had been speaking full-time for about three years, but I conflated this professional success with having a personal life, and when travels ceased during COVID I realized that while I may have been traveling quite frequently, I was still very much in a bubble, for my only socialization in my personal life was with my mom, the one human who had been by my side since day one. The decision to move to LA by myself and leave my mom’s side, the sole source of safety and support I had ever known, was brutally painful, to say the least. However, discomfort is the impetus behind growth of any kind, and now, for the first time in my entire life of 31 years, I am fully independent, and for the first time in 20 years, I can finally say three words I had always dreamed of saying: “I have friends”. It’s excruciatingly overwhelming at times and emotionally exhausting, but I know I have to encounter the immense growing pains in order to make up for my lack of social experience.

I have an incredible career, but the friction I encounter with society on a daily basis is a lot to cope with. My job requires a lot of travel, and I’ve had numerous meltdowns (mental and emotional breakdowns due to system overload stemming from external stimuli and exacerbated symptoms of OCD and anxiety, all in the midst of an extremely overwhelming scenario) at airports where passersby see a grown man curled into a ball, sobbing, rocking back and forth, and biting his nails. If I looked more disabled, maybe people would be more understanding, but no one would know or think I have autism when I’m walking down the street—so if they see me having a meltdown, they don’t recognize that as autism, and either look upon me as if I am crazy, or don’t look at all and pretend I’m invisible. I am not sure which response is more soul-crushing.

It’s a rough world out there, for during my moments of crisis, where all I need is some simple reassurance and compassion, I have had cops called on me. When I have meltdowns in public, I just look like a scary big grown man, and no one wants to come close to me. I receive no help—and I know a lot of people go through these situations too. Once I was in Dallas on a layover, and I missed my connection. I had a meltdown and was crying. Ten desk agents were right in front of me and not one even looked at me. I even said, “I have a disability, can someone please help me? ” They just continued to ignore me. The trauma that occurs in situations like this deepens a lifelong wound of being cast aside by society.

In situations like that, I need simple human connection. People need more training on emotional awareness—look into my eyes and see that I’m struggling. I know it’s not intentional, it’s from a lack of awareness. I don’t need you to fix anything, I just want support. Just sit next to me and ask if there’s anything you can do. I will most likely say that just asking that question helps.

We run from things we don’t understand because they scare us, for we as humans fear the unknown. Yet, if we can stop and stare back at our fears, instead of turning our back on them, we begin to see that which scares us dissipate like morning fog, revealing behind it a beautiful sunrise.

Travel is picking back up again for my speaking engagements now, and so I embrace the suffering. My experiences with a lack of understanding are frustrating, but I continue to do it because I have a passion inside of me to tell others how far I’ve come, and I want others to know they can do it too.

I gave a TED Talk at UCLA a few months ago, and recently did my first open mic performance. My journey has always been arduous, but now I can say that it has become beautifully arduous, for so many great things are happening for me now. My potential is sky high, and I have had more personal and professional success just one year into being fully independent than I had in my prior 30 years combined. Who knows what I’ll do or where I will go, but I have full faith that this journey will only continue to become more fulfilling. I followed my passion and success found me. If it is one thing I don’t want to regret on my deathbed, it would be not following my heart at any given moment– we have to follow our heart, it truly knows the way! You may go on some beautiful detours and scenic routes, but with patience and gratitude, life will unfold before you.

Want to read more stories like this? Visit thearcwebdev.wpengine.com/stories. 

 

Website: www.TheAutisticPoet.com

Instagram: @russl.co

Spoken word poem: “Dear Russell”

A young boy of color smiles, seated at a table with a birthday cake in front of him.

Meet Yusuf, A 10-Year-Old With Autism and Big Dreams!

/in /by Pam Katz

A young boy of color smiles, seated at a table with a birthday cake in front of him.

My name is Yusuf and I’m 10 years old. I am in 5th grade. I like to play hockey, write blogs, and make videos for fun. I am hoping to create a YouTube channel soon. I like school so far and one of my favorite subjects is math.

Something I am proud of is playing hockey and doing stuff above grade level. I can also play soccer really well—I really like sports. I want people to know that I’m actually very smart. I’m learning eighth-grade things.

But when I was young, there was this one kid that kept making fun of how I speak, and I was only in second grade. I thought if I could just be nice, everything will work out, and I didn’t know how to defend myself. Eventually, he stopped bullying me and I learned how to be nice, but to be yourself and don’t let people take advantage of you.

One of the things I like to do is play with my friends during recess. We play freeze tag, tag, and kickball—and ultimate frisbee. My best friends are Whitman and James. I like to play games with them, and we make up missions to solve a puzzle.

One of the best things that happened to me was when I got my iPad Pro. On my iPad I make music and videos, and draw!

When I grow up, one of the things I want to do is play hockey and be on a team.

When I am older, I will also get my own house and after that, try to take care of the bills. I think I will know how to take care of the house and my money and use it responsibly and have a good life. I have never been on a plane, and I would like to go to Nigeria someday and see my family.

I would help change the world by being nice. People are always mean and if I taught people how to be nice and why, and all the advantages of being nice and the skills I have…people would be kinder.

Want to read more stories like this? Visit thearcwebdev.wpengine.com/stories. 

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Alice and Soojung’s Story

/in , /by Pam Katz

“We’ve spent most of her life waiting for the help we need, for the wellbeing of our family.”

Soojung teaches middle school math and has three wonderful children. Her middle child, Alice, has Rett Syndrome, and has severe seizures, scoliosis, and uses a G-tube for nutrition, fluids, and medications. Alice has had many major and minor surgeries throughout her childhood, and every time Soojung and her husband requested at-home nursing care for her recoveries, it was denied by private insurers.

Alice’s pediatrician sat Soojung down and said, “You can’t go on like this.” The round-the-clock care and the toll of the stress was overwhelming them.

With the pediatrician’s help, Alice was finally accepted for services through the Medicaid program when she was 11 years old. Night nursing services led to a great improvement in Alice’s health, keeping her out of the hospital for the first year in her life. Soojung went back to the classroom, where she loves teaching math. And today, with the addition of day nursing services, Alice is 15 years old and able to participate in school, at home during 2020, and in-person in 2021 while Soojung teaches her students.

The Arc is fighting to make sure no family has to wait years for services that improve a child’s health and ability to thrive in the community.

“My daughter has the right to receive an equal chance of living her life, and Medicaid provides that extra help she needs to survive, learn, and thrive. The Arc’s work is so critical to ensure that Alice has a fulfilling life.”

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When Bruce Entered My Life

/in /by Pam Katz

By Evelyn Baron, written in 1991

An older woman with glasses smiling. In 1964, at age 40, I was happily married for 17 years and the mother of three children—a daughter, 14, and sons, seven and 10. With all three children in school, I decided to enter college to fulfill a lifelong dream. Shortly after I started, I found out I was pregnant. I was stunned. Life changed for all of us once my baby, Bruce, was born. But my desire to attend college never waned. I started taking courses on nights, weekends, and in the summer, juggling my responsibility to four children and to my aging parents.

When Bruce was two, he wasn’t walking, but I hadn’t been alarmed because my third child had also walked late. I took him to the pediatrician. After running some tests, the doctor told us Bruce had Down syndrome. The doctor then described that Bruce would be like a puppy dog we would pet.

I was in total shock and don’t remember how I drove home. The next few days remain a blur as his words rang over and over in my head. My beautiful baby, how could he be likened to an animal? Would it be different now that we found out he had Down syndrome? No way.

We continued to treat him the same, he was no different than he had been the week before his diagnosis. I can still hear my third child saying, “No matter what, he’s my brother…”. I also remember well my response to an acquaintance when she asked if I would place him in an institution. I let her know that this was my baby she was talking about and that he had his home with us, just like any of our other children.

Our children were wonderful—they continued to teach him and to expect from him all that he could, and he prospered and grew from this loving environment. Our friends and families rallied to give us respite when we needed them. He was eager to learn at his own pace, and we were always there to give him the assistance he needed.

A woman in a graduation cap and gown stands on a paved area, with a young boy in a dress shirt and tie to her left looking at her.

Back at college, I started taking courses to learn more about disability to help me in raising my child. I finalized my major as rehabilitation and started to take internships at facilities where there were people with disabilities.

Finally, after attending classes part-time for 10 years, I had amassed the needed 130 credits and graduated Cum Laude. I watched the local papers to put my education to work. I saw an ad for an executive director for The Arc in Enfield, Connecticut. When I applied, the parent volunteers who posted the listing explained how I would be their first Executive Director to start much-needed programming.

With little knowledge of how to get programs started but strong determination, I proceeded to initiate numerous programs and services. Wherever there was a possibility of a grant, I was there, and we were most times successful. For the next 16 years, I found myself working long hours, meeting with families and boards of directors, and working closely with town, state, and federal legislators and school systems. It was always a labor of love. As Bruce’s mother, I would often boast of his and others’ achievements to groups when I spoke to help them understand how these people had the right and ability to live and work in the community. We started group homes where neighbors at first were apprehensive. I remember a meeting in the home of one where I was confronted by an angry group. I let them know our people would be good neighbors and they had nothing to fear. I let them know how as a mother, what had happened to me could happen to any of them, and it would be them begging to give our people a chance, just like I was. They accepted the homes and never had a problem again. Before I retired three years ago, I succeeded in building for Enfield a large new building to house their many programs. No more church basements, old schools—they have their own beautiful building.

Bruce has always amazed us with his extraordinary level of understanding and compassion. We threw out the books long ago that said how limited he would be. After many years of Bruce and I trekking 60 miles to Sunday school (no other schools that were closer to us would accept him), at 13 Bruce had his Bar Mitzvah, something he wanted. When he said the prayers he studied, he stood there so proudly. Every one of our 200 guests, including the Rabbi and Cantor all cried for joy as he took his rightful place within the congregation.

We have tried for Bruce to have as near a normal life as possible. He’s always had many friends, went to camp, junior, and senior high school, and when he graduated, he started to work as a bagger at a local market, where he still works. They continually tell us what a fine worker he is. There are now many people with disabilities working, and it makes me proud that I was at the forefront of helping this to happen.

Bruce, now 25, continues to live at home. He remains an integral part of our lives.

When Bruce was diagnosed, we received the news as a tragedy—but over Bruce’s life, we realized the real tragedy was the limitations people placed on him.

A man in a suit, smiling at the camera.

Five years after this was written, Bruce passed away.

Bruce would have given the shirt off his back throughout his life to care for someone, so his family continued his legacy of giving even after his passing through organ donation. One recipient, Tom, was given Bruce’s liver and became an unofficial part of the family. He remains close with them to this day and thanks Bruce and Evelyn for his gift of life.

Hundreds of community members attended Bruce’s funeral and spoke about how he influenced their lives and shattered their misperceptions. Bruce’s life—and Evelyn’s fierce advocacy—fundamentally changed their community and helped move the needle on people’s perceptions of what is possible for someone with a disability when they have the support of family and community.