49 minute read
30 Leaders Impacting Disability Policy
by Mary Elizabeth Robertson and Joel Sams
To view the full 22-page spread, please visit csgovts.info/3gMsM3k. To view a full plain-text version of the magazine, visit csgovts.info/3hjcm1N
Across the country, lawmakers, commissioners, directors, governors and other individuals work to enrich the U.S. through their contributions to communities, and many are impacted by a disability. Despite differences in political party or background, job title or community, they all share one thing in common: The Americans With Disabilities Act brought accessibility and opportunity to their personal and professional lives. As the nation celebrates 30 years of the groundbreaking legislation, we recognize our members who continue to bring awareness to disability issues and advocate for people with disabilities as they look ahead to the work that still needs to be done.
CYRUS HABIB | Lieutenant Governor | Washington
Nearing the top of Mount Kilimanjaro, the lieutenant governor of Washington came down with bronchitis. He contemplated not summiting the top of the 19,340-foot dormant volcano.
“No one was going to believe it’s not from bronchitis,” Lt. Gov. Cyrus Habib said with a laugh. Motivated by the need to prove that a blind man could complete the summit, he pushed through. “The patronizing sense of pity is more powerful than vanity. That sense of ‘what am I going to tell them?’”
Habib, a Rhodes Scholar, was elected to the Washington House of Representatives in 2012 and became a state senator in 2014.
“My focus in the House and Senate was on entrepreneurship,” he said. “My district included the Microsoft campus.”
Habib was able to serve a unique and economically diverse area of the state and said he was especially able to help his districts as someone with a disability. He had a childhood eye cancer that caused blindness and became blind a year before the Americans with Disabilities Act (ADA) was passed in 1990.
“The biggest barrier I faced was the assumption and attitude of some of the grown-ups I encountered,” he said of his childhood.
Habib recalls being in elementary school and school officials did not want him to play on the playground.
“The school administration thought it was too dangerous for me,” he said. “My mom went to the school and took me with her so I would learn to advocate (for myself).”
His mom told school staff she would help her son learn his way around the playground.
“She said, ‘he is going to learn his way around. I can fix a broken arm, but I can’t fix a broken spirit,’” Habib said. “I learned the importance of advocacy. I deserved to be included.”
His mother’s advocacy impacted his life tremendously. “I still have this experience where people’s expectation of what I can do is not rooted in reality.”
In Washington, the lieutenant governor always serves as the senate president. When he assumed office, several people wanted to know how Habib would be able to call on other senators. Because of his disability, a touch screen was installed on the senate floor that sends a name in Braille to Habib.
“So many legislators have told me they didn’t think I would be able to do this,” he said.
Habib believes more needs to be done regarding ADA to create full opportunity for all.
Passionate about creating opportunity for all, he created Boundless Washington, an outdoor leadership program for young people with disabilities. Through the program, young people learn leadership and advocacy. Additionally, Habib said the disability community has a wide range of needs and preferences, and the ADA needs to catch up in areas of technology.
“Recognize you’re dealing with someone who has been thinking outside the box for years.”.
SHELLEY HUGHES | Senator | Alaska
Alaska state Sen. Shelley Hughes is known for telling it like it is, even when it comes to a cancer diagnosis. In 2017, Hughes went to her doctor for a routine mammogram and was later diagnosed with breast cancer. She decided to be upfront and honest with her constituents.
“People appreciated my transparency and authenticity,” she said.
Hughes surrounded herself with a support system and is now three years cancer free. Like many, she was unaware of the benefits that the Americans with Disabilities Act (ADA) can provide those who are limited due to a cancer diagnosis. For example, a portion of the law includes allowing cancer patients to keep working during and after treatments.
“It would be helpful for others, if the Department of Labor made sure people knew it,” she said.
Hughes suggested that workplaces offer trainings on the benefits of the ADA in the instance that employees need help while undergoing cancer treatments.
“I want everyone who is battling to get support,” she said.
Following her diagnosis, Hughes has worked to pass legislation to make health care more affordable in Alaska.
“The cost (in Alaska) is the highest in the U.S. and in the world,” she said. “It is impacting families and individuals and needs to be addressed.”
ANTHONY PORTANTINO | Senator | California
California state Sen. Anthony Portantino never imagined he would be in public office, especially as a child with attention deficit hyperactivity disorder (ADHD) and dyslexia.
“I was rather shy as a young person and I didn’t like to be the center of attention,” he said. “I never thought I would be a politician. When I started, I was uncomfortable and nervous public speaking.”
As he grew up, he was able to hone those skills and now views his disabilities in a positive light.
Portantino became a state senator in 2016 after serving from 2006 to 2012 in the California Assembly. As a child, Portantino said early intervention was something he could have benefitted from. This year, he authored Senate Bill 1174, which would require a dyslexia assessment of children between kindergarten and second grade.
“Sixty percent of people in prison are dyslexic,” Portantino said. “The sooner we evaluate the individuals, the more we can do.”
The Americans With Disabilities Act covers learning disabilities like dyslexia, and Portantino believes the ADA allows all people to embrace who they are.
“It’s about allowing people to be who they are.”
JULIE MORRISON | Senator | Illinois
Ever the advocate, Illinois state Sen. Julie Morrison never stops fighting for the rights of people with disabilities.
“People with disabilities are regular people whose challenges may be more apparent than others,” Morrison said in a 2019 press release on the International Day of Persons with Disabilities. “I will continue to strive toward statewide inclusion and fight to provide those with disabilities more well-deserved rights and freedoms.”
Morrison has authored several pieces of legislation that increased state employment of individuals with disabilities, created programs for trainees with disabilities for state agencies with more than 1,500 employees and required the state to conduct annual presentations to state agencies about hiring programs available to individuals with disabilities. She has also been an advocate for supportive housing for those with developmental disabilities.
Morrison is the chair of the Human Services Committee as well as the Special Needs Caucus, a bipartisan group that advocates for the needs of Illinois constituents with disabilities.
BRANDON REED | Representative | Kentucky
Kentucky state Rep. Brandon Reed has cerebral palsy and experienced a traumatic brain injury in 2007. He hasn’t let these disabilities stop him, though — he has served in the Kentucky House since 2017.
“While these were challenging circumstances, I’ve worked all of my life to overcome the adversity associated with them,” Reed told the Lebanon Enterprise. “Thanks to hard work, dedication and perseverance, I have been able to overcome tremendous obstacles and raise awareness for all that can be accomplished, no matter what difficulties life throws at you.”
In 2019, Reed joined Rep. Al Gentry to create the Engage and Empower Caucus, which advocates for people with disabilities in Kentucky.
““We may come from different parties and different parts of the state, but we all want to do what we can to bring the private and public sectors together in a way that truly benefits everyone,” Reed said to Spectrum News in 2019.
MUFFY DAVIS | Representative | Idaho
Her dreams of being an Olympic skier did not falter when Idaho state Rep. Muffy Davis was involved in a skiing accident 30 years ago. Rather, she simply shifted her dreams.
Davis competed in the 1998 Paralympics in Japan and received a bronze medal for slalom. During the 2002 Winter Paralympics in Salt Lake City, she received three silver medals in the downhill, super-G and giant slalom events. In 2012, she switched sports and during the 2012 London Paralympic Games she won three gold medals in handcycling events.
“After the 2016 election, I decided to get involved with local government,” she said.
Davis became a member of the Idaho House of Representatives in 2018. She says the Americans with Disabilities Act (ADA) changed accessibility, comparing it to the Civil Rights Act in terms of its impact on people with disabilities.
Davis says she has been blessed by legislation three times. She was born in 1972, the same year Title IX was signed into law. The Paralympic Committee, on which she currently serves, was formed in 1989. Finally, in 1990, the ADA was signed into law.
“I call it the blessing of adversity,” she said. “I’ve learned to think differently. You learn how to adapt and still make it work.”
Davis says the ADA laid the foundation for access, and the next step for inclusion will be addressing unconscious bias. Her hope for the future is that people will see her ability first.
“I think the first thing anyone sees is that I’m in a wheelchair,” she said. “I want the first thing they see to be what I can do.”
JIMMY ANDERSON | Representative | Wisconsin
Ten years ago, Jimmy Anderson never pictured himself in office — until his life drastically changed.
“I truly never saw myself in politics,” said the Wisconsin state representative. “I just ended up in a position where I saw how the system can grind people down and wanted to change it.”
Anderson was in a car accident, and a drunk driver took the lives of his mother, father and younger brother. Anderson was paralyzed from the chest down.
“I had just woken up from my spinal fusion surgery, having suffered a true tragedy, and then I received a letter from my health insurance company saying they were going to kick me off my plan because I had reached my lifetime maximum for benefits. I was terrified and had no idea how I could pay for the rest of my very much needed rehabilitation or wheelchair or anything.”
Anderson was then relieved when he received a letter a few days later stating the provisions of the Affordable Care Act had come into effect, eliminating lifetime limits.
“It was such an incredible relief, but it made me realize how important it is to get involved, to care about policy outcomes,” he said. Anderson went back to school, finished his law degree and started a nonprofit to help other victims of drunk driving, and then he ran for office.
In 2016, Anderson was elected to the Wisconsin legislature to represent Assembly District 47. He said his disability has changed the way he approaches life as a representative.
“It definitely adds some difficult hurdles that you have to overcome. It takes me a little extra time to do things, whether it is writing a brief or reviewing an amendment to a piece of legislation. I also have to rely on others a bit more than your typical elected official.
“The people in my office, Gillian McBride and Alyssa Donrath, have been really amazing when it comes to helping me with constituent outreach or corresponding with the administration or interest groups. I couldn’t do this work without them,” he said.
While in office, Anderson said he requested certain accommodations to be met for his disability. He is still awaiting some changes to be made. However, he said the Americans with Disabilities Act (ADA) has helped with some of those accommodations.
“The Americans with Disabilities Act has been pivotal when it comes to my being able to serve in office. Whether it is gaining physical access to the building of my office or receiving accommodations like voice recognition software, the ADA makes it possible for me to do my work. Not only that, but it also places the requirement on businesses to make sure that I can go to their restaurants or shop at their stores. It requires public transportation to provide me access. The list goes on and on. Without the ADA, my world would be incredibly small.”
Anderson said his disability helps him advocate for others who may not be able to advocate for themselves.
“My disability also adds a degree of responsibility,” he said. “There are people who see a little of themselves in me as somebody who is visibly disabled. It gives them hope that they too can one day run for office or be in a position of leadership. It also requires me to be the voice for those who often feel voiceless, to champion the many issues that impact disabled people here in Wisconsin. I’m lucky to have groups like Disability Rights Wisconsin and the Independent Living Council of Wisconsin who lead the way on disability issues and [give] me advice on how to address those issues at the state level.”
GREG HARRIS | Representative | Illinois
Illinois state Rep. Greg Harris knows what it’s like to feel discrimination because of a disability.
“I had gotten involved with community organizing when HIV came along,” he said. “You can’t sit back and wait for someone else to take action.”
Harris was elected to the Illinois General Assembly in 2006 and is currently the majority leader of the House of Representatives. He is the first openly gay person in Illinois to become a member of legislative leadership. He also lives with Human Immunodeficiency Virus (HIV).
Harris was motivated to get involved after he saw friends get sick and die. He said he saw discrimination during the HIV/AIDS crisis of the early 1990s.
“I wasn’t put out of my house because of it, but I know people who were,” he said.
Harris, who also experiences depression, appreciates the groundwork laid by the ADA.
“I wish people would push for broader access to health care,” he said.
Some of Harris’s most pressing concerns center around discrimination. He cites Illinois as being one of the first states to take action against discrimination.
GREG ABBOTT | Governor | Texas
Texas Gov. Greg Abbott was elected in 2014 to serve as the 48th governor of the state. Prior to his election, Abbott was the longest serving attorney general for the state.
Abbott became partially paralyzed in July 1984 after a limb of an oak tree fell on him while he was out running. Two steel rods were inserted in his back. Abbott often cites his back of steel that helps him fight for Texas families. Abbott points to his perseverance for helping him recover and become governor.
“After my accident, I had to rebuild my strength. I would roll up an eight-story parking garage — spending hours going up the ramps. With each floor, it got harder and harder. But I wouldn’t quit. Just one more, I would tell myself, just one more. I see life that way,” Abbott said during his campaign for governor.
KIM SCHOFIELD | Representative | Georgia
Georgia state Rep. Kim Schofield is proof that sometimes heroes really do wear capes. Donning a purple cape for awareness, Schofield unites Georgia’s state legislature for the cause of lupus research and support.
Schofield was diagnosed with lupus in 2000 after a visit to her optometrist, who then referred her to her primary care physician.
“My sight was disappearing,” she said. “The doctor thought it was arthritis in my eye.”
Her doctor then referred her to a rheumatologist. She left the doctor’s office confused, with several medications and a pamphlet on lupus.
“I knew nothing about it except that this was pretty serious, and I could die from this. Within three months, I had to be taken out of work,” she said.
Having little knowledge about the autoimmune disease, Schofield began to research and understand her illness.
“When you have lupus, your immune system is overactive,” she said. “Every morning you wake up feeling like you have the flu.”
Frustrated with the scarcity of resources on lupus, Schofield began a lupus support group that operated out of her church. The support group eventually joined with the Lupus Chapter of Georgia.
Schofield says the biggest struggle of living with lupus is that people do not believe she is sick because lupus is an invisible illness. Schofield encountered several obstacles at work because coworkers did not believe she was actually ill.
“I had to fight. I am a human being that didn’t ask to be sick,” she said.
In 2008, Schofield began working as a lupus researcher, focusing on incidence and prevalence of lupus and population-based data collection at Emory University in the Georgia Lupus Clinic.
“I started educating people on these diseases and how to create space protecting someone who has an invisible disability,” she said.
That same year, Schofield began approaching every legislator in Georgia to talk about lupus and gain support for research. In 2014, she helped create the Georgia Council on Lupus Education and Awareness, an organization to create better research opportunities and more positive outcomes for lupus patients. In 2017, she was approached to run for office and decided to take a chance. She was elected to the Georgia House of Representatives for District 60 serving the Metro Atlanta area.
Throughout her journey, she said the Americans with Disabilities Act has given her a voice.
From 2008 to 2019, Schofield served as the Advocacy Chair for the Georgia Chapter of the Lupus Foundation of America and for more than 10 years has done pivotal work to help the over 55,000 Georgians living with and impacted by lupus.
Her mission to be a voice for those with lupus hasn’t changed.
“Lupus is my anchor and has helped me raise awareness to educate about hidden and invisible diseases.”
RAHNEE PATRICK | Director of DHS Division of Rehabilitation Services | Illinois
In her Twitter bio, Rahnee Patrick describes herself as a “disabled Thai-White woman who lives out loud.” Her life has indeed been dedicated to living life out loud and to the fullest.
Patrick serves as the director of the Illinois Department of Human Services Division of Rehabilitation Services. “The work I’m doing now, my experience comes from being a customer.”
Patrick has psoriasis, arthritis and depression. She began using vocational services to find employment at 16.
“They helped me get through college,” she said. “I have seen how the delivery of government services has helped customers.”
Patrick found herself having to overcome barriers, and she began to believe what others thought of her.
“People felt that I needed to be protected and felt that I couldn’t support myself,” she said. “Even I bought into that.”
Other barriers she faced included the lack of insurance coverage for her disabilities. “I needed to get help because private insurance doesn’t cover the service I needed. I want to work and provide for myself.”
Patrick found that the passage of the Americans With Disabilities Act (ADA) created opportunity.
“The ADA made a difference for me,” she said of the law passed between her sophomore and junior year of high school. “I didn’t have protections in place. ADA has really helped people be able to work and it helps us to be able to participate in public office. We aren’t included in everything.”
She recalls a conference she wanted to attend in high school. She wanted to take a bicycle because it provided an option for transportation that was comfortable, but the conference officials said no. Patrick recognized the lack of protections in place that made it more difficult for her to attend the conference comfortably.
Today, she works to be an advocate for people with disabilities to live out loud.
“I have a large network of people with disabilities — they’re still advocates,” she said. “I think having access to that feedback allows us to adjust to the needs of our customer base.
EMILY RANDALL | Senator | Washington
When the buses at her junior high school parked in front of the wheelchair accessibility ramp, Emily Randall immediately approached her principal to stop the buses from parking there so that her little sister, Olivia, could access the school.
“I used my big sister leadership skills to go into the principal’s office to make sure the buses wouldn’t block the ramp again,” said the Washington state senator.
Since then, Randall has made it her life mission to advocate for others. Her experience advocating for Olivia made her particularly passionate for advocating for people with disabilities..
“My sister has a severe disability, and that shaped what I thought service looked like.”
Randall was working in the nonprofit sector before she felt she needed to do more. She was elected to the Washington state senate in 2018.
“It was time to step up and do more and make sure the people falling through the cracks didn’t fall more,” Randall said.
Advocating for Olivia taught her how to prioritize voices that often go unheard.
Randall works hard as a legislator to center the voices of people with disabilities.
She said the Americans With Disabilities Act (ADA) codified equity for those with disabilities, a cause she is still working for today.
“I continue to see the long-lasting work around ADA. I have the great honor of working alongside and advocating even prior to the passage of ADA for greater equity.”
Randall was influenced heavily by the work of her mother.
“I learned so much from my mom and see her as an inspiring woman,” she said.
While growing up, Randall watched her mom navigate through the piles of paperwork that often accompany people with disabilities as they try and secure health care or medical needs — an area Randall says needs some work.
“In our state, we are one of the lowest in investments in our disabled community,” she said. “More needs to be done.”
LARRY BAGLEY | Representative | Louisiana
Louisiana state Rep. Larry Bagley knows all too well the trauma that can occur from a loved one’s battle with mental health conditions. His wife had bipolar disorder and depression. Over the years, her symptoms worsened, which led to her suicide.
“It leaves everybody so much pain,” he told the Advocate in 2018. Her struggle with mental illness led him to support laws such as HB148, which created a state suicide prevention plan and increased awareness of mental health.
The Americans with Disabilities Act (ADA) covers mental health conditions when they meet certain criteria. Bagley advocates for those who need help for mental health conditions.
AL GENTRY | Representative | Kentucky
When Kentucky state Rep. Al Gentry lost his arm in an accident in 1993, he couldn’t have predicted that golf would be a path to healing — or that it could relate to public service.
Gentry was injured while working as a geologist at a construction site. He credits golf, a sport he had played from childhood through college, with bolstering his confidence during recovery. As he got involved with athletics for people with disabilities, he noticed that various groups struggled to coordinate their efforts. Seeing a need for greater cooperation, Gentry helped create a national organization to help make the game of golf more inclusive.
Gentry saw a similar pattern in 2016, when he was elected to the Kentucky House of Representatives. Multiple groups advocated for people with disabilities across the Commonwealth — how could they be unified? That question led to the formation of the Engage and Empower caucus, a bipartisan effort to improve communication and address needs for Kentuckians with disabilities.
“I never campaigned on disability issues, but I was there about six weeks before I realized I needed to get involved,” Gentry said. “I was meeting with anybody and everybody. I thought, ‘How in the world can we bring these folks together and have a larger voice?’”
Open to every Kentucky legislator and structured to remain bipartisan, the Engage and Empower Caucus focuses includes four subcommittees that cover issues from health care and insurance to building access to legislative review.
“Our number one issue overall is that we want to be able to expand the communication pipeline between those who advocate for different groups and the state legislature so we can more efficiently and effectively pass legislation or amend legislation that addresses the real issues that are out there for people with disabilities,” Gentry said. “We hope new legislators can serve on caucus and that it will be something long-term and long lasting.”
Gentry says the impact of the ADA goes far beyond the building accessibility guidelines most people think of, like wheelchair ramps. Instead, it’s about inclusion — and that’s what excites him most about the Engage and Empower Caucus.
Gentry said. “You do have strengths, too, and we can recognize that as a society and provide opportunities so that you can use your strength to the best of your ability. Everybody around you will have a better life because you will be a glowing example of what it takes.”
Still deeply involved in sports for people with disabilities, Gentry says athletics can teach powerful lessons about persistence, confidence and courage that apply to daily life as much as they do to the golf course.
“Sports is so much like life,” Gentry said. “It’s a series of ups and downs — not a matter of if you get knocked down, but when. It’s a matter of ‘Are you going to get back up?’ It’s something you can work on, practice, perfect, see yourself improving, and that generates confidence and self-esteem to do more.”
GARNET COLEMAN | Representative | Texas
Garnet Coleman had long struggled with depression. But it was a few years into his tenure as a Texas state representative before he was able to find ways to manage the extreme highs and deep lows he felt.
“I knew if I didn’t do something different than what I was doing, I was going to commit suicide,” Coleman said.
In 1995, Coleman was diagnosed with bipolar disorder. He was elected in 1991 to the Texas House of Representatives. He described his behavior as productive.
“I never knew I had highs,” he said of his intensely focused behavior at work. “I just knew I had lows.”
He sought out treatment and struggled at first with the changes that medication created in his life.
“The hardest thing for people with bipolar is when I first was taking lithium, I felt like a dishrag,” Coleman said. “When I was flattening out a mood, it makes you feel flat.”
Coleman describes himself as passionate — his passion for the people of Texas has allowed him to work for better mental health and human services options and resources in Texas as part of the Appropriations Committee.
“Insurance policies still don’t cover mental illness,” he said. “The best thing to do to help people with mental illness is to give them health coverage. Period.”
Coleman credits the Affordable Care Act (ADA) and resources through the Americans With Disabilities Act as ways constituents are able to receive needed care.
“Resources are better since the passage of ADA, but it depends on what state you live in. A lot of people are disabled and can’t get the care they need.”
Coleman said the ADA brings people “out of the shadows,” and he has been vocal about his diagnosis since he received it.
“Once you know you have a diagnosis, you are able to get better,” he said. “It’s like you have an injury to your leg and you get it fixed and you can run faster.”
CAROL BEATTY | Secretary of Disabilities | Maryland
Secretary Carol Beatty doesn’t know a day without advocating for the disability community. Her 40- year career began as a direct support professional in residential programs for people with intellectual disabilities and includes 21 years as executive director for a local chapter of The Arc, the nation’s largest community-based organization advocating for and with people with intellectual and developmental disabilities. In March 2015, Beatty was appointed by Maryland Gov. Larry Hogan to serve as the Maryland’s Secretary of The Department of Disabilities.
“I have spent my entire career working on behalf of and with people with intellectual and other disabilities,” she said. “I want to empower people with disabilities to live meaningful lives in their communities.”
She also has a disability, having contracted polio during one of the last outbreaks before the common use of the vaccine in the 1950s.
Beatty’s parents always encouraged her to try out any activities. Growing up in a family that valued sports and physical activity, she played softball, basketball and golf. While other children could be unkind at times, Beatty always had support and encouragement from the family and friends surrounding her.
Beatty said polio left her with a lifelong physical disability and today she has post-polio syndrome, a condition that impacts polio survivors later in life.
“It can impact adults in very different ways. Polio survivors who experience gradual weakening in muscles are able to use mobility and other assistive technology devices to remain active and independent.”
For people with intellectual and other disabilities, there has been significant positive change since the late 70s when Beatty began her career.
“People started moving out of institutions and back to their communities. The passage of the Americans with Disabilities Act in 1990 provided even more opportunities. The ADA ensures people with disabilities have equal access and celebrates that we are friends, neighbors, coworkers and family members and contribute to the richness of the community, state and country.”
As Secretary of The Maryland Department of Disabilities, Beatty’s responsibilities include advising Gov. Larry Hogan and his administration on increasing opportunities, access and choice for people with disabilities in Maryland.
“The ADA was a hallmark piece of legislation, but it is living and breathing. Since 1990, it has been the pathway to equal access and opportunity for people with disabilities in communities and states. Although much progress has been made, there is still much work to be done including the ability to participate in the digital society.”
CAROL MURPHY | Assemblywoman | New Jersey
New Jersey Assemblywoman Carol Murphy understands firsthand the struggle so many families face when they have a loved one with an illness or disability. Murphy spent time caring for her father, who died of Agent Orange exposure, and her mother, who she lost to Alzheimer’s disease. Murphy also cared for her sister as she battled lupus.
Murphy’s work as a caregiver inspired her leadership in the New Jersey State Assembly. She sponsored Assembly Bill 6075, “Lindsay’s Law,” which provides tax benefits to organ and bone marrow donors and their employers and provides paid time off to donors who are state or local government employees. Murphy tried to donate a kidney to her sister but was unfortunately not a match.
She has also sponsored other laws to help people with disabilities, including Assembly Bill 1272, which focused on changing the way the Division of Developmental Disabilities provides services by expanding community-based support.
STEPHEN SWEENEY | Senator | New Jersey
New Jersey Senate President Stephen Sweeney says his 27-year-old daughter, Lauren, might be a better politician than he is. He recalls a time when another lawmaker called him to discuss governmental issues of the day. That lawmaker had to speak to Lauren before he would engage in business with the senator. Sweeney’s daughter has Down syndrome, and her ability to lead a full life has inspired and shaped Sweeney’s goals.
“I want people to be gainfully employed and look beyond the disability to the person,” he said. Sweeney championed a bill in 2019 that allows businesses to receive a tax credit if they hired workers with disabilities.
Sweeney said the Americans with Disabilities Act (ADA) is one of the first pieces of legislation to guarantee access and opportunity for his daughter.
Today, Sweeney’s focus is on Lauren and creating housing for individuals with disabilities in New Jersey. He wants affordable housing options for those with varying needs.
“My daughter might be different, but she is living as full a life as you can,” he said.
Sweeney continues to advocate for those with disabilities because of the influence of his daughter.
“Lauren has a relationship with everyone,” he said. “My goal is to ensure she has an enriched and fulfilled life.”
CHRISTINE TARTAGLIONE | Senator | Pennsylvania
For Pennsylvania state Sen. Christine Tartaglione, empathy is a powerful teacher. That’s why she organizes an annual Disabilities Awareness Day at the Pennsylvania Capitol. With dozens of participating organizations, the event offers opportunities to simulate the experience of a person with physical disabilities.
“I encourage my colleagues to take part — spend a day in a wheelchair; spend a day trying not to be able to see or hear,” Tartaglione said. “They start to see things in a different light. Their first question is always, ‘Is the location handicap accessible?’”
Tartaglione was paralyzed in 2003 following a boating accident. While preparing to fish at the Jersey shore, she found herself launched off the deck into the air. Another boat, moving too fast and piloted under the influence of alcohol, had rammed into the side of Tartaglione’s boat. Her fall crushed two vertebrae, leaving her partially paralyzed.
Looking back, she wishes she could give her younger self some advice: “Take a deep breath. You’ll get through this. Life will go on.”
At the time, Tartaglione was one of Pennsylvania’s youngest senators — energetic, hopeful, full of questions. The healing process was difficult, both physically and emotionally, but she soon learned she could provide crucial leadership in disability issues. Today, as the fifth woman elected to the Pennsylvania state Senate and the state’s only senator in a wheelchair, Tartaglione hopes she can be an inspiration for others.
“I got into disabilities issues because it took me a long time to get through those stages of grief,” she said. “I believe God wants me to be an advocate for physically challenged people, because I’m in a position to do it, so I’m okay with it.”
Tartaglione doesn’t think about her injury until there’s something she can’t do, or a building she can’t access. She says the Americans with Disabilities Act was a good place to start, but it’s not the finish line.
In additional to her personal leadership, Tartaglione works closely with the Pennsylvania Governor’s Cabinet and Advisory Committee for People with Disabilities and networks to help provide solutions and “cut red tape” for people with disabilities.
While she encourages people to understand the perspective of people with disabilities, she points out that it’s all too easy to simply overlook concerns like accessibility. Having the benefit of a changed perspective herself, before and after her accident, she encourages others to make the leap.
“It’s never easy to step into someone else’s shoes, and it makes people uncomfortable. Just try to take the blinders off and look at that individual and see what they have to go through on a daily basis, and your opinion is going to change.”
RON LUCEY | Executive Director of the Governor's Commitee on People with Disabilities | Texas
As executive director of the Texas Governor’s Committee on People with Disabilities, Ron Lucey manages a five-member staff with goals that include providing information and resources to people with disabilities and advising the governor on disability issues. In his current role, he is able to effectively advocate for the rights of Texans with disabilities.
DAN MCCONCHIE | Senator | Illinois
Sen. Dan McConchie has transformed the Illinois Senate from the inside out.
McConchie became a wheelchair user in 2007 after being injured in a hit-and-run accident. In 2016, he was elected to office, and since then he has been a trailblazer.
“Those of us with significant physical disabilities in public life bring a unique experience to the governing table. our insight reinforces why having diversity in democracy is so important to ensure no group of people is left behind.”
McConchie has found ways around some of the obstacles he has faced.
“Due to their age, government buildings tend to not be very accessible,” he said. “I was on a joint task force, and we were assigned a committee room. Except no one but me realized it was not accessible for me. These kinds of ongoing barriers to access remain a significant issue for our participatory democracy.”
McConchie said the Americans with Disabilities Act (ADA) was a start for creating access and opportunities for people with disabilities, but more needs to be done.
McConchie recalls a time he attended an area festival. After calling to ensure it was accessible, he attended the festival, only to be disappointed at the lack of accessibility. He called the venue again, and their lawyer would simply state that they complied with all ADA laws and requirements. So he stopped going. Years later, he ended up back at that venue and found the place transformed from an accessibility standpoint. He wanted to know what had changed.
“The difference was this venue had created an advisory group of people with a variety of disabilities,” he said. “The venue made changes annually based on their feedback. Now it’s a great place to go, and I don’t hesitate to go and participate.”
Inspired by this, he co-authored a bill to create an ADA Compliance Commission in Illinois. The purpose of the commission would be to review designs requiring ADA compliance and to offer feedback.
“It would allow for an architect or builder to bring their plans to people with various disabilities for their suggestions on how to make accessibility better. No single person can foresee all the barriers to access. I want to create a statewide advisory board to help ensure every single person, regardless of disability, has access.”
Before his accident, McConchie said his interaction with individuals with disabilities was limited. Now that he has a disability himself, he understands firsthand many of the issues that exist and works to create more opportunities for access.
“I want Illinois to be a national leader in helping the country go beyond the basics of ADA and begin to provide real, equal access for all on a voluntary and collaborative basis. This isn’t hard. It just takes focus.”
GRAHAM SISSON | Executive Director | Alabama Governor's Office on Disability
Vulcan, the world’s tallest cast iron statue, stands on a hill overlooking Birmingham, Alabama. For some, the statue evokes the city’s industrial past. For Dr. Graham Sisson, it’s also an illustration of what he’s been saying for decades: Accessibility is a win for everyone.
As executive director of the Alabama Governor’s Office on Disability (GOOD), a deputy attorney general for the state of Alabama and the state’s ADA coordinator, Sisson has devoted his career to advocating for people with disabilities. When a recent renovation of the Vulcan statue sought to remove an unsightly elevator, he negotiated with the parties involved to build a new elevator in a less conspicuous position. Far from being a detraction, the elevator was a hit.
“Most people don’t use the stairs; most people are going to use the elevator,” Sisson said. “It’s one of those things that’s made it even more of an attraction. That’s the ideal situation — where the Americans with Disabilities Act can work, where it’s not an undue burden, and you can actually come up with something that’s even better than what you had before.”
The Americans with Disabilities Act of 1990 has been a touchstone throughout Sisson’s personal life and career. In 1982, two days before he was scheduled to report to Cadet Basic Training at West Point, he was hit by a drunk driver while a passenger. He woke up from an eight-week coma to find that he was paralyzed from the waist down. Sisson attended the University of North Alabama, serving as student government association president and graduating with honors. During law school at Vanderbilt, Sisson wrote his third-year thesis on the ADA, which was signed into law the month after he graduated.
“I was introduced to [the ADA] very quickly and did a lot of research on it,” Sisson said. “It means a lot. It’s the premier civil rights law, I think, for people with disabilities, and it’s all about mainstreaming and inclusion, which mean a lot to me — having the same opportunities as anyone else, despite having a disability.”
Both in private law practice and in government roles, Sisson has dedicated his life to advocating for people with disabilities. As executive director of GOOD, Sisson advances accessibility in a host of ways, from providing technical assistance to providing information about ADA compliance to ensuring that government communication provides accessible options.
“It excites me that I get to actually make a difference,” Sisson said. “When I help to make sure something is accessible, a building is constructed in the correct way, make sure that people with disabilities are included, that’s exciting to me, because I immediately get to see a good, positive result from that.”
Disability advocacy is a constant effort, Sisson said. One lesson he’s learned — open communication and consensus building are powerful means of change.
“The most effective tool is not necessarily suing an entity because they don’t comply with the ADA,” Sisson said. “I think the best way is to try to create understanding and awareness. In other words, don’t do it because the law says you have to do it — do it because it’s the right thing to do. It’s a win-win situation.”
LOU D’ALLESANDRO | Senator | New Hampshire
A New Hampshire state senator since 1998, Lou D’Allesandro knows role models are important. That’s why he introduced his then 10-year-old grandson, Anthony Smith, to the New Hampshire Senate last year. State leaders, he says, need to meet more heroes like Anthony.
Born with multiple disabilities, including a hearing impairment, Anthony has inspired many. When Anthony complained to his mom, Christine, that superheroes “don’t wear hearing aids,” she reached out to Marvel Comics for help.
“[I told her] if Anthony wore his hearing aids — which he called Blue Ear since they were made of blue plastic — we’d make him an honorary Avenger,” Marvel Custom Solutions Creative Director Bill Rosemann recalled in 2014. Blue Ear, the new character based on Anthony, starred in a book called “Sound Effects,” which was released in October 2014.
Anthony continues to inspire, and in May 2018 he was awarded the Hear-O Award by The Children’s Hearing Institute in New York.
Inspired by his grandson, D’Allesandro has become even more involved in disability issues, working closely with the New Hampshire Governor’s Commission on Disability and supporting the Greenfield, New Hampshire-based Crotched Mountain Foundation, which helps children, students and adults achieve maximum independence.
“The kid is a miracle in and of himself,” D’Allesandro said. “His superhero stature really has been inspiring to people all over the world. He gets emails from people all over the world who had inhibitions about letting people know they had limited hearing, and kids who would not wear hearing aids are now wearing hearing aids.”
DAN MILLER | Representative | Pennsylvania
Rep. Dan Miller of Pennsylvania has a storied career of advocating for others. He has worked as a firefighter, public defender and teacher.
“In the mid-2000s, a bunch of youth were getting arrested who were on the autism spectrum,” he said. “My initial advocacy came out of experiences seeing how difficult it was for young people with a diagnosis to get traction to build into a life we would all hope for.”
Miller has noticed how life has improved for individuals with disabilities since the passage of the Americans with Disabilities Act.
Miller said the ADA has created opportunity for all.
“It’s about inclusion and fullness of life,” he said. “There’s more to do.”
GAVIN NEWSOM | Governor | California
California Gov. Gavin Newsom knows all too well that some disabilities are less visible than others. Though he was diagnosed with dyslexia at five years old, Newsom didn’t find out about his disability until fifth grade, when he discovered paperwork about dyslexia in his mother’s office.
“That really hit home, and it explained why everyone else was running into their parents’ arms after school and I was stuck in that shack behind the school every Monday, Wednesday and Friday with four or five other students,” Newsom told the Yale Center for Dyslexia & Creativity (YCDC).
During a 2017 conversation with Ryan Quinn Smith, a child actor who also has dyslexia, Newsom explained that his mother had tried to prevent him from being stigmatized.
“She didn’t want me to give up by saying, ‘Well, I have this thing,’” Newsom said. “That’s what she thought was the right thing.”
There was no escaping reality, however — for Newsom, reading would be a lifelong challenge. In school, he dreaded being called on to read aloud. He remembers one incident, around the fifth grade, where he was called on to read and everyone laughed. High school and the SAT proved even more challenging, as Newsom’s anxiety about reading, math and test-taking increased.
Thanks to his mother’s persistence, extra classes and a scholarship to play baseball, Newsom attended Santa Clara University, where he discovered a love for politics.
“Baseball gave me some self-esteem and confidence, and then I found my bliss and my passion in politics,” Newsom told YCDC. “All of a sudden I got good grades, because I loved the subject matter. What I found was that there was a contemporary nature to politics, not political theory necessarily, but what was going on in real life, and as difficult as it was to learn about it, I actually cared enough about it to work a little harder. So, I started looking at newspapers like textbooks, and to this day, I’ll still underline newspapers because, otherwise, I can read five pages and not remember one thing I read.”
After building a hospitality management business, Newsom entered politics in 1996, serving on San Francisco’s Parking and Traffic Commission. In 2003, he became the youngest mayor of San Francisco. He was elected lieutenant governor of California in 2010 and assumed the office of governor on Jan. 7, 2019.
Today, Newsom still finds creative ways to cope with dyslexia, including extensive practice and memorization when it comes to speeches — he estimates an hour of preparation for each minute of a speech — and he credits dyslexia with strengthening his memorization skills and ability to “think on his feet.”
Newsom says that without his mother’s hard work to provide extra support, like after-school classes and summer programs, he would not have succeeded. As governor, he wants to ensure those supports are available to everyone, especially those who can’t afford to pay for extra resources.
“That’s the overwhelming majority of people with a learning disability and attention deficit and all kinds of learning issues — that they don’t get that support. And they’re extraordinarily gifted people. They just need to discover that, and they need the help to discover that. That’s why it’s so important. We can’t allow that talent to go unmined […]”.
JENNIFER LONGDON | Representative | Arizona
“As we pulled into that parking lot, we’re still in that ‘best-vacation-ever, we’re-getting-married’ romantic bliss,” Arizona state Rep. Jennifer Longdon told Rolling Stone magazine. “Life couldn’t have been any more perfect in that moment. And then there was this really loud sound.”
Longdon and her then-fiancé were severely injured during a drive-by shooting in 2004, just days after setting a wedding date. The perpetrator was never caught. Her fiancé suffered brain injuries and was left blind. Longdon was paralyzed from the mid-chest down.
Since that time, Longdon has become a tireless advocate for people with disabilities. She was elected to the Arizona House of Representatives in 2018.
“I’ve always been part of trying to make positive policy changes to impact the [disablility] community,” Longdon told Forbes. “And I ended up in a position where there was a seat open, and my state legislature in my district and I decided to run. I decided that I had to see disability represented because, you know, I see strong advocates working at different areas of diversity, but disability is not at that table. And because there is no one with a disability talking, you know, our point of view is missing.”
Longdon organized a bipartisan meeting that led to the formation of the House Ad Hoc Committee on the Abuse and Neglect of Vulnerable Adults and has championed many disability issues, including worker protections, funding for a statewide ADA coordinator, supported decision making and housing solutions for people with developmental disabilities.
As a leader and advocate, Longdon is committed promoting accessibility, both in terms of architecture and in terms of attitudes. to During a 2015 TED Talk, Longdon asked her listeners to “look for those places where ableism creeps in and creates barriers.”
“I challenge you to ask, ‘Why is that there? How can we fix it? How do we create community for everyone and give a seat at the table to every person? How do we recognize the human-ness in everybody and create truly inclusive space?’”
KRISTEN COX | Executive Director of the Governor's Office of Management and Budget | Utah
It’s not enough for state governments to serve their constituents, said Kristen Cox, executive director of the Utah Governor’s Office of Management and Budget. They should also reflect the people they serve including people with disabilities.
Cox, who is blind, previously served as executive director of the Utah Department of Workforce Services and secretary of Maryland’s first cabinet-level Department of Disabilities. She was also appointed by former President George W. Bush to serve as special assistant to the commissioner of the Rehabilitation Services Administration (RSA) and worked in government affairs for the National Federation of the Blind.
Cox appreciates the accessibility mandated by the ADA, from physical access to signage to websites, a foundation on which further access and inclusion can be built.
“While the blind and people with disabilities still strive for full access and inclusion, the ADA gives us the foundation to achieve this goal,” Cox said. “A mentor of mine once told me, ‘Equal rights requires equal responsibility.’ I believe it is incumbent on me to do all I can do to contribute to society while also advocating that society gives me the opportunity to contribute.”
LORENA GONZALEZ | Assemblywoman | California
California Assemblywoman Lorena Gonzalez is an outspoken advocate for those with learning disabilities. As someone with dyslexia, Gonzalez believes in educating others on how her brain reads and understands. In December, she tweeted, “*A word about dyslexia* My brain works differently. When I write things — if the phone or just my thumb causes typos — my mind doesn’t necessarily register them. I see exactly what I thought I was writing. My brain shortcuts words & phrases. So, please excuse the posts w/typos.”
Gonzalez is the first Latina in California history to chair the Assembly Appropriations Committee. She is also chairwoman of the Select Committee on Women in the Workplace and chair of the Latino Caucus.
DAVID D’ARCANGELO | Commisioner of the Mass. Commission for the Blind | Massachusetts
The commissioner of the Massachusetts Commission for the Blind (MCB) might be legally blind, but he has a dynamic vision for people with disabilities.
“The path to prosperity is paved with perseverance,” said Commissioner David D’Arcangelo, who was born with X-linked juvenile retinoschisis and is legally blind. Having a detached retina, experiencing periods of time with no sight and continually dealing with vitreous hemorrhages, D’Arcangelo’s perspective affords him an appreciation of what persistence brings.
“My family and friends did their best to ensure that my experiences were as diverse as possible, which helped fuel my independence and self-determination,” he said.
D’Arcangelo went to college, which took him longer to complete in part because of losing his eyesight, and then decided to focus on a career in public service, a vocational path that is in his blood.
“My father was a public servant and his commitment to helping people is something we always shared.”
D’Arcangelo’s public service career includes working for six governors, serving several years as an aide in the state Senate and being involved in many other mission-driven organizations. He also served as a councilor-at-large in the City of Malden for three terms. Then in 2014, D’Arcangelo ran for secretary of state in Massachusetts, which may make him one of the only candidates to openly identify as a person with a disability and reach a statewide ballot in Massachusetts.
While he was not elected as secretary, D’Arcangelo was offered the opportunity to be the director of the Massachusetts Office on Disability (MOD). Now serving as the commissioner for MCB, he relishes his role of furthering access and opportunities for people with disabilities and values the importance of the Americans With Disabilities Act (ADA).
“The ADA is the most important civil rights law passed for people with disabilities,” he said. “My focus and passion is to bring access and opportunities for people with disabilities.”
D’Arcangelo believes that employment opportunities for people with disabilities is vital, and while he credits the ADA for progress, he knows that there is still much work to be done.
Being blind has taught D’Arcangelo to think creatively to accomplish the tasks before him. “Let’s choose to focus upon what people can do. I genuinely believe that we can improve the human condition and make positive gains for all of our people.”
DARREN JERNIGAN | Representative | Tennessee
Rep. Darren Jernigan became paralyzed in June 1990 after he suffered a broken neck in an automobile accident. He was a sophomore in college.
“Becoming paralyzed at 20 years old, I pretty much started my career with paralysis,” Jernigan said. “I have always had the attitude that I possess a disability and that it does not possess me.”
The disability did not stop him. Jernigan took two years off for rehabilitation but then returned to school to finish his degree, double majoring in political science and public relations. Jernigan went on to work for the U.S. Department of State and Congress. He worked at the Veterans Administration and ultimately received his master’s degree in May 2000.
Jernigan got his political start in 2002, when he was elected the Metro Nashville Davidson County Democratic Committeeman for his district. In 2007, he was elected to the Metro Council for Nashville Davidson County representing District 11. He served for six years before resigning in January 2014.
In 2012, Jernigan ran for a seat to serve in the Tennessee State House of Representatives for District 60 and won.
Jernigan says his paralysis is part of who he is.
Jernigan became paralyzed a month before the passage of the Americans with Disabilities Act (ADA).
“When it passed, I had only been in the hospital for a month and hospital staff kept telling me what a major deal it was,” Jernigan said. “And they were right. If I had to boil the ADA down to one word it would be ‘access.’ Access to employment, transportation, technology, public and private programs and services, public businesses, communications and an overall incorporation of people with disabilities into society.”
“It could be as little as meeting someone for lunch at a restaurant with a ramp to something more significant, as asking HR for a reasonable accommodation in the workplace,” he said.
His disability allows him to serve all Tennesseans and especially those with disabilities.
“I have passed a plethora of legislation concerning disability related issues and have worked to educate my colleagues on the importance of recognizing an often-overlooked segment of our population,” he said. “I’m good at advocating by example. Being successful as a person with a severe disability sometimes can speak for itself. I feel I can empathize with people who have disabilities facing obstacles they bring to my attention, as I have experienced much of the same hurdles.”
Jernigan believes that the public should pay more attention to the ADA and the impact it makes.
“Every person reading this, or someone they love, will likely become disabled in their lifetime,” he said. “Either by old age, disease or a traumatic event, it will happen, and they will be grateful legislation such as the ADA is there to protect their civil rights.”
