Laura Hershey, renowned activist, poet, and prolific writer, died Nov. 26 after a very short illness. Hershey was born with a form of muscular dystrophy. She served as a poster child for the Jerry Lewis telethon, but as an adult believed that this telethon was demeaning, patronizing and exploitative of people with disabilities. She protested telethons, sometimes in person, always by her writing.
Hershey was very active in the ADAPT movement and the Not Dead Yet movement. She was a prolific writer. Her latest book, Stark Before Dark, will be published soon. Other writings can be found at www.laurahershey.com and www.cripcommentaries.com
She is best known for the poem Practice Makes You Proud. Twin Cities composer Dianne Benjamin produced a choral piece for Calliope Women’s Chorus using part of the poem in the song “You Get Proud by Practicing.”
Hershey left behind a gift, written two days before she died. It was for the website of the Christopher and Dana Reeves Foundation. In keeping with Thanksgiving, she listed things she was grateful for.
During Thanksgiving season, it’s time to talk about gratitude. This is a tricky subject for people with disabilities. It has its pros and cons. The positive is that there really is so much to be grateful about, and doing so helps us feel good and live well. The negative arises out of a whole history of exclusion and power imbalances.
I’m grateful for the disability community. It’s diverse, dynamic, fractious, cantankerous, complacent, focused, distractible, powerful, pressed-down, and always enduring. Its members sustain me in critical ways. Disability rights groups such as ADAPT, and the Colorado Cross-Disability Coalition, and Not Dead Yet, defend my rights to public transportation access, entry to local businesses, attendant supports, Medicaid coverage, and LIFE. Disabled women and queer folks and people of color engage me in understanding intersectionalities among gender, race, and disability oppression, and the need to move beyond rights toward real justice.
I’m grateful for my body, though it often falls short. It’s always had its “issues,” to use a euphemism, and as I age these are multiplying. But it’s who I am and how I interact with the world and other people and myself. My body hurts me and limits me more than I would like. It also receives and processes art and music and ocean breezes and delicious Vitamixed food. It sends out my voice, my voice of request and direction, my voice of protest, my voice of poetry and prose, my voice of desire.
I’m grateful for my spectacular attendants, who meet my needs skillfully, support my choices, bring extremely useful additional talents to their jobs, such as wheelchair repair and culinary art.
Of course I’m also grateful for the Medicaid program that pays for their services, without which they wouldn’t be here at all. I’m also grateful for the Medicaid “work incentive” rules which enable me to write and consult, earn money, and still keep these services.
So now for the dark side of gratitude. All too often, people with disabilities are pressured to feel gratitude for things that are their basic human rights—subsidized housing, support services, inclusion in the community, basic acceptance and respect. Some people think that disability is a drain on the economy and an imposition on others. They don’t want to be reminded of the prevalence and inevitability of disability in any society, in any person’s experience or family. In response to this deep discomfort, they try to impose conditions on anything “given” to people with disabilities—conditions like passiveness, submissiveness, limited demands, and constant thank yous.
We have to demand the things that are essential to our lives, equality, and quality of life. We must refuse to feel gratitude for these, except the normal level of gratitude that anyone might feel for living in a time and place that still supports human life. We can’t succumb to feelings like embarrassment or shame regarding our needs, even if those needs are more extensive than the average person’s needs. That will only reinforce and perpetuate our inequality, and the pulling away of vital state- and federally-funded support services.
Gratitude is natural and healthy, but should never be obligatory. Identifying and sharing our real sources of gratitude is a good counter-balance to the tendency for self-destructive gratitude.
Hershey is survived by her partner Robin, their daughter Shannon, her parents and her brother.