The new anthology book "Accessing Parenthood: Stories by and About Parents With Disabilities" calls attention to an often overlooked segment of the disabled population. The book is thin, a mere 124 pages, yet it carries a lot of emotional weight. The publisher is Oleb Books, a small press which only publishes works by writers with disabilities.
"Accessing Parenthood" was edited by the late Susie Angel and Laura Perna of the Coalition of Texans With Disabilities, an advocacy group in the Lone Star State. Angel tragically did not live to see the book's publication as she passed away from cancer shortly before it was completed. The book is dedicated to her memory.
The book's layout is simple. After a forward by the editors there are nine short memoir pieces written by nine authors who share their disability journey. A variety of disabilities are represented, including visible disabilities like multiple sclerosis and invisible disabilities such as depression. Each author writes candidly about the challenges they face in their daily lives.
Popping wheelies
Stories are told both from the point of view of living with a disability while raising children, and from the vantage point of being a child with a disabled parent. In "Coloring Unicorns and Popping Wheelies," Jennifer Heettner recalls a childhood in which she asked why her mother was in a wheelchair. She had been told by her father that her mother was injured after falling into a manhole.
Heettner writes eloquently about having to be cautious when she touched her mother so as not to hurt her. But as her friends kept asking her what was wrong with her mother, Heettner knew that something was amiss, that her parents weren't being honest with her. Finally, they told her the truth. Her mother had a disease, multiple sclerosis.
Also included is a piece by a disabled mom whose son shares her disability. In "Three Days Before the Witches Fly," Suzanne Nielsen writes about how she has dealt with her lifelong battle against severe, debilitating depression. There's an ironic twist to Nielsen's tale. She is the mother of two sons, one of whom also lives with depression.
Moving honesty
Two of the authors fall under the LGBT umbrella. One is Dylan Ward, a hearing-impaired gay man who lives with his husband and son. In "Hearing My Son's World," Ward expresses his frustration at not being able to hear the world as his son hears it. Though with the help of a hearing aid he has some hearing in one ear, he is often unable to decipher the sounds around him.
When they're in the family car he often cannot hear what his son says from the back seat. When they're at the playground he finds it difficult to connect with other parents. Ward shares these anecdotes, and others, with a candor that is brutally honest and moving.
"I don't think it was difficult to share this story," Ward wrote in an email interview with the Bay Area Reporter. "I am much better at sharing personal truths through writing than I am in any other way. I think writing this piece really helped me to process some of the frustrations and self-doubt I was feeling at the time, especially as a newer parent; but also, as a person with a disability who struggles a little bit more than the average parent."
Ward added that his husband has yet to read his story, though he plans to share the piece with his husband in the near future. His son also hasn't read the piece.
"But I hope he will someday," Ward said of his son. "I'll probably introduce the piece to him, along with my other writing at some point, and let him discover it, and hopefully appreciate it, on his own terms. This is a goal I have as my son gets older, to let him see what I do as a writer and how I express myself through it."
Ward hopes that people who read his story will understand that while parenting is difficult for anyone, it is often much harder for parents with disabilities. He said that he tries not to let his disability be a hindrance. Challenges and all, he loves being a parent and loves watching his son grow up to find his own independence and understanding of the world.
"I guess one thing I'd like the general public to know is that being deaf or hard-of-hearing is simply a part of who I am and while sometimes I wish I could hear normally, there are times I appreciate and experience the world in my own unique way," he said. "Understanding my limitations goes a long way in showing respect toward me as a person."
Enduring
Another particularly moving story in the anthology is "Little Stuffed Grape Leaf" by Lou Evlalia, who is nonbinary. Evlalia lives with Ehlers Danlos Syndrome, a connective tissue disorder which can cause a person's skin to be stretchy, and also leave a person with limbs that are loose and hyperextensible. This can cause the limbs to easily dislocate.
There are other symptoms of the condition, which can be quite painful. Evlalia, who prefers to go by they/them pronouns, does in fact live with constant pain. They live with their child and partner, and wrote beautifully about the frustrations of taking part in family outings to the beach while using a wheelchair and cane. They also write about how their life was changed by the disability justice movement.
"That EDS and connective tissue differences in general are actually really common and look a lot of different ways," Evlalia said in an interview with the BAR. "It's twice as common in people of color but white people but white people make up 98% of the diagnosed population. So just having an EDS diagnosis is a privileged thing, despite the years of medical abuse and neglect I've experienced. Even though there is more research and understanding happening because of the overlaps with long COVID, medical racism and care neglect in this population is rampant."
Evlalia hopes that their message of disability justice and parenting will touch readers deeply.
"Disability can be a beautiful part of life, parenting and family," they said. "I want to hear their disabled stories too. I wanted to share my journey with internalized ableism, and realize that I was still in the middle of it while I was writing it. Learning about disability justice lineages through Sins Invalid (a disability justice-based movement and performance project that celebrates disabled people. It's led by Black, indigenous, queer, trans and nonbinary disabled people) was the key to opening a whole new disabled life for me. I hope readers will seek out and uplift the incredible offerings from leaders and teachers of this robust movement."
'Accessing Parenthood: Stories by and About Parents With Disabilities,' Edited by Susie Angel, Laura Perna. 124 pages. $12.95 paperback, $4.95 Kindle. Oleb Books. www.olebbooks.com
Never miss a story! Keep up to date on the latest news, arts, politics, entertainment, and nightlife.
Sign up for the Bay Area Reporter's free weekday email newsletter. You'll receive our newsletters and special offers from our community partners.
Support California's largest LGBTQ newsroom. Your one-time, monthly, or annual contribution advocates for LGBTQ communities. Amplify a trusted voice providing news, information, and cultural coverage to all members of our community, regardless of their ability to pay -- Donate today!