This heartfelt piece by Terry Moore-Painter reflects on her family’s personal journey and the early fight for disability rights that helped shape TLC. Terry shares the story of her parents’ advocacy for her brother, Jimmy, and reminds us why we must continue pushing for inclusion, funding, and support for people with disabilities today.

By Terry Moore-Painter

Have you ever asked yourself the question: What do you love too much to lose? Would it be your home, your right to vote, your special place to connect to nature? For most of us, there are many answers to that question.

In 1967, my mother’s answer to that question was my seven-year-old brother, Jimmy. No longer able to care for him at home, my parents found only one option for their seven year old son with profound disabilities. That year, my parents, Betty and Durham Moore, had to place him  at one of our state’s four institutions for people who were intellectually and developmentally disabled. As she heard the heavy metal door shut behind her, with her son on the other side, she felt as if she really might lose him.

For almost two years, Jimmy lived in a ward of 25 residents. Each of them was wearing only a diaper and a white t-shirt, there were no distinguishing characteristics between them. Many lay on pallets on the floor; others sat on chairs that were missing chair legs, resulting in human legs and feet that were often contorted at strange angles. Some of the children were blind, most made only cries or guttural sounds, some beat their heads, many slept the entire day. Two attendants took care of them, wiping noses and drool and checking for diapers needing changing. The children received only basic custodial care. Physical therapy, educational programming, even the chance to go outside did not exist.

 During the nightmare of those years, my parents  shifted into action. Other parents joined them recounting their heartbreaking and personal stories to anyone who would listen: legislators, the governor, policy makers, community leaders, and donors. Betty frequented the legislative building so often that when she entered, word would be spread, That Moore woman is here again. Parents became more visible, demanding for their children what other children had. Our home phone rang constantly as plans and strategies developed.

 In the preface of the book, Keep Singing, about two Raleigh mothers spurred into activism on behalf of their sons, Allan Gurganus wrote: Nothing is more radical and righteous and clever than a mother defending her child. And I would add: no one can better convincingly tell the story than parents and families, because it is their story.

 Betty and Durham Moore and other parents decades ago had too much to lose if their efforts on behalf of their children failed. For over fifty years, parents and families and people who are disabled have advocated non-stop for funding for residential care, health care, public education, opportunity, accessibility, acceptance, and more. TLC became a reality because of their advocacy efforts.

But the job of advocating for the needs of people with disabilities never ends. And we must never assume that the job is complete, the funding and programs chiseled in concrete. Policies can be changed. Rights can be taken away. Funds can be withdrawn. Support can disappear. Those of us concerned with disabilities must continue the work and effort of people who came before us. We must continue to educate others with our stories. We must be passionate and determined and unrelenting. We must do this work because we care too much to lose the advances that have been made. Our loved ones’ lives depend on it.