Meet Jim Obergefell, ALS Advocate

Before 2011, Jim Obergefell knew very little about ALS until his partner of 21 years, John Arthur, was diagnosed with the disease. Living in Ohio, they connected with the Central & Southern Ohio Chapter of The ALS Association, and received critically-needed services and support. Jim and John decided to marry in 2013, and their quest for spousal rights would change the lives of LGBTQIA+ people all across the nation.

Jim Obergefell first met John Arthur in Cincinnati, Ohio, while he was with a mutual friend. After they met for the third time at John’s New Year’s Eve party, they became inseparable and were loving partners for over two decades.

The first time Jim noticed something was wrong with John was in 2012. As John was walking around their home, Jim would hear one foot hit the floor harder than the other. Jim first thought it was a pulled muscle, and after it did not go away, John urged Jim to see a doctor. After several months of testing and visits, John received the diagnosis of ALS. As John’s symptoms from ALS progressed, he thought ahead about the necessary changes to make his life, and Jim’s easier, including moving to a new house without stairs, and that was only in Jim’s name as the owner. Both Jim and John worked together to ensure they could continue to live their lives as normally as possible while facing the challenges of ALS and keeping John safe and comfortable. 

Throughout the course of John’s battle with ALS, Jim served as his primary caregiver and prioritized John’s health and happiness, inspired by his deep love for him. 

Then on June 26, 2013, Jim and John watched a television announcement that the Supreme Court had struck down the Defense of Marriage Act with their decision in United States v. Windsor. After the news, Jim hugged and kissed John and told him, “Let’s get married.”

At the time, John’s progression from the disease meant that he no longer had the ability to walk, could only move his right hand, and had great difficulty speaking. Since Ohio did not allow for persons of the same sex to marry, Jim had to find a state that would and did not require both Jim and John to appear in person to apply for the marriage license. It was decided that the state was Maryland and that they would have to fly there on a special medical transport airplane. The cost of this was exorbitant- over $20,000.

Five days after Jim and John were married, they were connected with Civil Rights Attorney Alphonse (Al) Gerhardstein. Al explained to them that the state of Ohio would not recognize their marriage. This meant that when John died, his death certificate would list his marital status as “unmarried”, and that Jim would not be listed as his “Surviving Spouse.” Al stated that he thought they had a strong legal case and asked Jim and John if they wanted to do something about it. They answered in less than a minute, “Yes, we do.” With Al’s help, John and Jim filed a lawsuit against the Governor of Ohio and the Attorney General, demanding they recognize their marriage on John’s death certificate at the time of death.

They won their lawsuit against the state of Ohio in July 2013, and then, just three months later, John died from ALS on October 22, 2013. Jim would often share that it was a great comfort to John that, when he died, he knew he was a married man. 

After John’s death, the state of Ohio appealed the district court ruling, and it was overturned. This meant the state would not have to acknowledge out-of-state lawful marriages for same-sex couples. Jim had the opportunity to fight for their marriage and submit for an appeal to the Supreme Court along with the marriages of the more than 30 other plaintiffs in Michigan, Ohio, Kentucky, and Tennessee.

On June 26, 2015, the U.S. Supreme Court made a landmark decision on marriage equality when they ruled that the Constitution guaranteed a right to same-sex marriage in all 50 states. The civil rights case, “Obergefell v. Hodges.”

Since this time, Jim still lives in his hometown of Sandusky, Ohio, and dedicates his time to many different projects, including his work with the inception and launch of the John Arthur Flats, the first LGBTQ+ affirming 55+ senior affordable housing development in Cincinnati, Ohio. The new community helps meet the demand for inclusive, affordable housing in the region, where the National Low Income Housing Coalition reports only 43 available rental homes per every 100 low-income renters in Ohio. Studies also show that LGBTQ+ seniors experience higher rates of housing discrimination and poverty, making them especially at risk of housing vulnerability. Residents will also enjoy ample on-site community amenities and will have access to robust on-site supportive services, including social programming, community events, and medical care.

Jim is also the co-founder of Equality Vines, the world’s first cause wine portfolio dedicated to equality for all people, located in Guerneville, California. Every bottle of wine not only tells a story but also supports organizations dedicated to the ideals of We the People and Equal Justice Under Law. A percentage of all proceeds from the sales of Equality Vines are donated or directed to community partners across a range of diversity, human rights and social justice causes and organizations.

Jim remains a passionate ALS advocate and has been very supportive of the many care programs and services provided to everyone in the ALS community by ALS Golden West. These include professional care management services, Certified ALS Centers and Clinics, durable medical and communication equipment loan programs, educational programs and webinars, and many diverse support groups. 

“There are many challenges that people with ALS and their loved ones face on a daily basis,” said Daniel Potapshyn, Golden West support group facilitator and former care manager. “It is remarkable what people like Jim do to give back to others facing the disease.”

“Without ALS coming into our lives, there would not have been the urgency for us to get married,” shared Jim. “Then, our legal case would’ve never happened, and I would’ve never become what I am now, a civil rights activist.”

Golden West celebrates Jim for his many efforts as a civil rights activist. We are forever grateful for his efforts as an ALS advocate and support of our ALS community. 

Anyone touched by ALS can help advance the search for effective treatments and cures. Sharing your experiences, whether you’re a person living with ALS, a family member, a friend, or interested in supporting our cause, is a powerful way to raise awareness and generate funds in support of our ALS community.  We hope that you will consider sharing your story today.