Josie and Mike

No longer two but one.

Love is a funny thing. There are always ups and downs in a relationship and you only find it when you aren’t looking for it and my relationship with my husband, Mike, is no different. At the time that I met Mike was the Youth Development Director for the Parents. Education And Advocacy Leadership Center (PEAL Center) and I was charged with running Youth Development Institutes across the state for young adults with disabilities. This was the second Institute that I had ever run and things were not going smoothly. Binders had not been put together, there were not enough hotel rooms, and some individuals who attended never registered (including Mike). Mike had been brought to the conference thinking that his mom was taking him out to dinner. Prior to the conference, he had never identified as a person with a disability and his mother knew that he would not have voluntarily attended this conference if he knew what it was about. Mike and his mother did not have any idea what they were getting into, and I’m not sure if his mother would have brought him if she knew that she would be introducing him to his future wife. On the last day of the Institute, Mike recognized that his invisible disability was not a mar on his identity and that he could embrace it as a part of who he is. For Mike, as it is for many of us, this was life altering and he fell in love with the disability community and empowerment. He became increasingly involved in youth development work and, after about a year of working together, he ”proposed” to me with a ring pop at our statewide transition conference. We dated for seven years (I’m a slow mover) and got married on May 28, 2017.

Disabilities and relationships in general can be tricky. From the presence of a nurse interfering with regular high school friendships, trying to date with the company of personal care attendants, restrictive legislation, and marriage with the existence of various “helpers” takes some creativity. Initially we went on a lot of group and double dates. Slowly, Mike was able to assume some of the tasks that I needed help with. He was more willing to support me than I was willing to accept it. I felt the need to create different roles for personal care attendants versus my boyfriend and wanted to protect the romance of this new relationship.

Disability supports and legislation are often not supportive of marriage. If we were to legally get married, I would lose any cash or medical benefit that had been previously available because of our combined incomes. Because of these income limitations and their impact on receiving support services, Mike and I are not legally married; rather we are married by the church. By doing this, we were able to establish the covenant of marriage without the restrictions of services.

Even though we been together for almost 8 years, we have not figured everything out. Balancing his role as a husband versus an aide, handling disagreements with an audience of care providers, and privacy have continued to be topics that we work on. It’s certainly not easy, and no one said that it would be. But for individuals with disabilities who receive services, it becomes a marriage between an entourage of service providers and the couple. As a care provider decides to work for me, she needs to recognize that she is not just caring for me as an individual, but that she is supporting a wife, the other half of a marriage. I need support in being a healthy independent individual, an employee, a business owner, a dog mom, and a wife.

We accepted that we are not going to have a typical marriage and that is okay.