.288 | to Lora, from Frank

I'm writing about my sister, Lora. She has been a forever presence in my life, teaching me and all others around her about love and affection and possibility. Lora has Down Syndrome. When she was born, my mother was told that Lora could go directly to an "institution," that she wouldn't have to even see Lora again if she didn't want to. Fortunately, my mother threw the social worker out of her hospital room and made my sister her life's work. Mom to Lora to specialists and doctors, enrolled her in special schools and hired tutors before there was any real recognition that people with developmental disabilities could lead productive and engaged lives. Lora went to sleepaway camp. She took piano and swimming lessons. She had books and homework - pushed and prodded - sometimes not very gently - by my domineering but determined mother. Ultimately, Lora graduated from high school and moved to semi-independent living, thanks to a remarkable agency in Connecticut called Marrakech. Lora lived in a group home then, for years, in a supervised condo with one other woman. She developed incredible skills caning chairs, painting, weaving. I have her pottery and a ladder back chair expertly caned in my home. Now 63, Lora lives in a group home again, still with Marrakech. Slowed by arthritis, hearing loss, and age, she remains the caring, affectionate, astonishing person she's always been - an inspiration to anyone who has a disability and knows what the world can dish out and to anyone who is able-bodied and takes a moment to reflect on what we take for granted.

When Lora was younger she would take the train by herself from New Haven to Washington, DC to visit. Sometimes she'd come off the train and find me on her own. Sometimes she'd ask a conductor for help. She went on trips with housemates and staff to Disneyworld. She worked most every day. And she absorbed setbacks of life with this-is-just-the-way-things-are equanimity: intense pain and back surgery, losing her teeth, this past year the cruelty and isolation of a pandemic-warped world.

Lora has always been capable of surprise. When I spoke to a disabilities summit several years ago, Lora was there. In the audience. But as I spoke, she marched up to me and reached for the mic. I gave it to her, of course. Looking out at over 2,500 people, half of them self-advocates, she said she wanted to talk about the "R" word. I was momentarily aghast. What was she about to say? She had been called "retarded" much of her life. Would she vent now and reveal anger, hover over a word so many had worked so hard to excise from the vernacular of the uninformed? Standing so tall at four feet six inches, Lora took in the room and then said with confidence and assertion, "I want to talk about respect. We all want respect." I will never forget that moment. I've never been prouder or more moved.

So my gratitude goes to my sister Lora, for a lifetime of strength, determination, achievement, and love. She has shown others that disabilities can be abilities, that independence comes in varying degrees, and that the able-bodied have no monopoly on purpose, aspiration, or fulfillment. She personifies the fact that every human being has potential, every human heart deserves love.

As I reflect on my work all these years as a journalist as a teacher, as a parent and partner, I realize I may have Lora to thank for helping to make me what I have become. Because of what she taught. Because of who she is. Because of her life story showing that the voices of the voiceless convey powerfully inspiring messages and all are capable of singing beautiful songs.