March 2023 - Vol. 17, Issue 3
Clients come to Special Needs Alliance (SNA) attorneys when facing difficult challenges due to an unexpected diagnosis or catastrophic accident. They are likely frustrated, distraught, and overwhelmed, navigating the labyrinth that is special needs law and the public benefits system while trying to take care of themselves or providing care to a loved one with high needs. These clients need expert attorneys to guide them, but they also need to feel seen and know they are not alone.
The SNA book club has a range of book recommendations that can offer clients a better understanding of their own or their loved one’s needs, affirmations that they are not alone, or simply a good story. The book themes include topics such as ALS, autism, brain injury, Down syndrome, bipolar disorder, raising a child who is not typical, and many others. Reading these books can help SNA members (and their clients) connect and reach a new understanding of their reality. You can find the list of books here. The SNA book club also welcomes recommendations—we’re always looking for a good read!
For our spring 2023 meeting, we are reading The Last Blue by Isla Morley.
The Last Blue is a love story told from the perspective of the protagonists. Jubilee is a young, sheltered woman from deep in the hills of Kentucky, and Havens is a world-travelled photographer sent to Kentucky to capture photographs of Appalachians “who are on times hard enough to use a little government assistance but not hard enough as to be beyond all help,” on behalf of President Roosevelt’s Farm Security Administration. Jubilee is one of the “Blue People.” She has a genetic condition called methemoglobinemia, a rare disorder in which a deficiency of the enzyme diaphorase results in an oxygen deficiency in the red blood cells. This causes the blood to appear brown, which in turn makes the skin appear blue. We know now (since about 1964) that the condition can be treated with methylene blue. Taken daily, it changes skin to the “right colored skin” as the Blue People call it in the book.
In isolated Appalachia, in the early part of the 20th century neither the Blue People themselves nor the townspeople understood why Jubilee and her brother Levi had blue skin. They did not know there were Blue People in other parts of the country, nor did they know the condition had a name and a cure. Were they possessed by the devil? Was it contagious? It led to fear amongst the townspeople who felt free to bully, harass, batter, and even kill Blue People without consequence.
When Havens and Jubilee meet, he is immediately entranced by her beauty. She, however, keeps him at arms-length, distrustful of him and his camera, because of her blue skin. She is afraid that if pictures of her, her brother Levi, and other Blue People of Kentucky are published, it will lead to more discrimination and violence.
The book raises questions discussed often in the disability world: if you could take a pill every morning so that you could be “typical,” would you take the pill? Would “the cure” change you—your essence? Would you know how to live in the world as typical? Would your loved ones want you to take the pill? What about your neighbors and those who had judged and persecuted you and your ancestors for generations? And can people who are not typical have passionate and wonderful love lives?
The book has two love stories: one between Jubilee and Havens and the other between Jubilee’s brother, Levi, and the reverend’s daughter, Sarah. Jubilee and Levi are Blue People and Havens and Sarah are “right colored.” Jubilee has never felt desirable or understood and is convinced she’ll never feel either until she meets Havens, and the two are eventually brought together by a love of nature. Levi and Sarah’s love story brings the simmering tensions in the town to a boil; seeing the harassment and violence Blue People endured, readers understand why Jubilee eventually decides to take methylene blue. But Jubilee realizes that not being blue won’t make her happy. She reflects, “I thought if I could just look like everyone else, everything would be okay, but I took those pills and ended up feeling lost in my own self. I’m formed around blue, and there’s no pill for that.” The Last Blue is a love story, but its essence is a story about identity, prejudice, and the importance of telling our own stories.
About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney.
Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website.