Amy Julia Becker:

The Myth of the Ideal

When Penny was first born, I assumed that the ideal human had average or “better than average” intellectual ability. I was wrong. Since then, I’ve come to believe that humans with intellectual disabilities contribute great gifts to me and to our society. There is no ideal amount of or type of intellectual ability. There are simply particular humans with particular offerings and particular needs. And those offerings and needs prompt questions to all of us:

Will we learn to cherish and receive one another as gifts? Or will we be people who control and critique and reject one another based on distorted ideas about what it means to be human?

Rachel Roth Aldhizer recently wrote about her four-year-old disabled son, David, whose rare condition requires nearly constant care. She describes him this way:

“David does not walk, talk or eat independently. He is visually impaired and has hearing loss. He has an unrepaired cleft palate open to protruding brain tissue, covered by a thin layer of mucous membrane. Developmentally, David is like a 10-month-old baby. He is our joy, and it is our privilege to parent him.”

She goes on to say:

“How we care for our most vulnerable reveals what we believe about ourselves… At one point or another most of us will lose our independence, health, rationality and will. Eventually we will rely wholly on someone else to care for us. Dependence, weakness, need of others: These are features, not bugs, of the human experience.”

These are features, not bugs, of the human experience.

“I’m also reading an excellent essay in the Atlantic about MAID (medical assistance in dying) in Canada. Elaina Plott Calabro tells a story of a man living in a long-term-care facility. He is feeble, and blind, and lonely. He decides to avail himself of MAID. Then, once he tells his family about this decision, they begin to visit him again. At this point, he realizes he does not want to die. He rescinds the request for MAID.

He doesn’t need to regain his previous bodily strength or his eyesight in order to experience a good life right now. But he does need relationships. He needs love.

Receiving disabled people as contributors who matter benefits all of us. It also alleviates the majority of the suffering associated with disability. But technology that allows us to choose some embryos and reject others, choose some fetuses and reject others, extend the life of some humans but support the death of others, creates a social hierarchy in which some people matter more than others, some people are more deserving than others, and all of us are competing with each other rather than understanding our need for one another.

The people who advocate for selecting embryos and ending life often do so with the intention of care. But controlling life stands in opposition to receiving life as a gift. Exerting power over humans distorts the invitation we have to live in relationships of love. Love does not depend upon physical or intellectual ability. It depends upon vulnerability and need, giving and receiving as we are, and a willingness to care for one another over time. Love anchors us and holds us and returns us to our full humanity.

Needy, vulnerable, limited. Beloved, beautiful, blessed. Humans.

I’d love to hear from you: What do you think makes life worth living? How do you see dependence? Is it a “feature” or a “flaw” of being human? Just hit reply and let me know your thoughts.

Blessings, Amy Julia

p.s. What I’m Pondering

After I wrote this newsletter, I learned that President Trump referred to autism as a “horror show” in a televised cabinet meeting. The language we use to describe disability matters. Speaking in sweeping, negative terms doesn’t help anyone. There are individuals with autism who experience tremendous hardship. Dehumanizing rhetoric doesn’t help them. There are also autistic individuals who enjoy their lives, sometimes in atypical ways. Whatever the experience, autistic people are beloved, particular, limited, and gifted humans who deserve to be seen and heard as such.