After a bout of post-surgical meningitis in the early 1970s, Dr. Jillian Horton’s sister Wendy was left with severe mental and physical disabilities. In this gutting essay, she recounts her mother’s struggles to get assistance with Wendy’s care. Jean Horton wrote letter after letter to provincial politicians in Manitoba, pleas for help for her daughter that went mostly ignored. “Wendy needed a residence that was capable of managing the complex medical needs of adults with brain injuries,” writes Dr. Jillian Horton. “The problem was that in Manitoba there was no such thing.”

Wendy’s surgery years earlier had been a “success”; her brain tumour had been completely excised. But in the days after that surgery, she developed bacterial meningitis. That infection changed the course of her life. Over a few cruel days, Wendy lost the ability to talk, write, walk, regulate her emotions and control her body. Eventually, when she was conscious, she often raged and fought, unable to speak or communicate her terror, pain and frustration.

As soon as it became clear that Wendy would be left severely physically and mentally disabled, many medical professionals began suggesting to my parents that everyone would be “better off” if she were in an institution.

But who exactly would be better off? My parents’ dream for Wendy’s life did not include separation from her family. They railed against ableism long before it had a name. They knew Wendy’s worth as a person with a disability was unchanged from her worth as a child born without one. But as is so often the case when parents fight and advocate tirelessly for disabled children, they were often branded “the problem.”