Alice Conway passed away on Saturday May 12, 2012 after five days in the hospital. She was a national treasure in the field of disability rights, and never uttered the word can’t. Conway was born in Lewiston, ME in 1960 the daughter of Fred and Marianne Dyer.  Alice was born with spina bifida and was one of the first children with a disability in the US to be included in a regular educational setting when, at age 4, she participated in a pilot program that would later become Head Start. In the mid-nineties, she would begin serving on the Head Start Board of Directors until her death.

Alice spent much of her youth in the Shriners Hospital in Springfield, MA. She attended Pine Tree Camp for much of the 60’s and 70’s. She did attend and graduate Lewiston High School and also attended UMaine Farmington. She did most of this before Individuals with Disablities Education Act was federal law and had to really fight with the school system to attend school. She often missed much of her schooling because she would be hospitalized. The director of Pine Tree Camp would tell her parents to schedule her surgeries during the year so she would not miss camp, it was considered that important that she attend.  Back when she was attending college, she would be in the hospital and would “just get a day pass” to take a test in Farmington.

Because she spent so much time in the hospital, she was one of the first patients to advocate for latex free protocols in Maine and  Massachusetts. She also would spend countless hours working with consumers and educating them on issues with latex allergies and other allergies, such as food allergies. Alice would go far beyond whatever the job required as an independent living specialist to make sure consumers would have what they needed.

In the mid nineties Alice sued and won in federal court against United Airlines.  Conway v. United was precedent setting because the issues and lack of access that were raised were addressed in the newer regulations that currently govern how a person with a disability is treated on any US flight. The next time you see a person with a disability on an airplane, they have Alice to thank.

After her court case, Alice remained incredibly active by serving on more boards of directors than I could possibly list, traveling to DC to lobby for issues from housing, of which she was an expert on, as well as working to defeat the assisted suicide bills in the Maine Legislature in 1998.  She was one of the leading voices in the 2000 referendum on the issue, appearing on the Maine Public Broadcasting Network and traveling to Boston to protest an international conference on euthanasia.  To Alice, this wasn’t some theoretical discriminatory bill or referendum, this was a fight she consistently fought, years after one doctor made the mistake of telling her that her condition was unlikely to get better and that it would be futile to continue to treat her. Slippery slope arguments were not important to her; to her the slippery slope was very real, and one she advocated to prevent other people with disabilities from having to deal with those issues. The defeat of the referendum was probably was due to the work Alice did, though she would probably argue that.

Alice adored family and her pride in her son Richard was something that she reminded people about on a consistent basis. Richard literally saved his uncle’s life a few weeks ago and Alice was extremely proud of him for that.  Her life partner, Dean, was content to be “in the background” when Alice was often working on various endeavors. In 2005, when she was in DC for the debates on the Terri Schiavo case in Congress, she called me a bunch of times, and would ask me to post to various listserves about what was going on, but she admonished me from using her name. So I simply wrote a friend is in DC and needs info on x, or said y is going on. It was cool to be getting the info. Alice was truly someone who felt as comfortable with politicians in DC or self advocates in Auburn.

I’ll miss our phone conversations, the advice, the snarky remarks we made about each other, the way she went out of her way to “call in and check up.” After I moved back in with my mom because my mom was dying of cancer, she would call asking for me and if I wasn’t home, she would have some pretty long conversations with my mom. Mom told me chats with Alice were comforting. Indeed, they were quite incredible, just like Alice herself.