National Research Center for Parents with Disabilities

Blog de la comunidad

¡Bienvenidos a nuestro blog de la comunidad!

Cada trimestre, seleccionaremos una historia compartida por padres con discapacidades para presentarla aquí, en nuestro blog de la comunidad. Para más detalles, vea nuestra convocatoria de presentaciones.

Como primera publicación en el blog, nos complace presentar dos relatos de padres con discapacidades.


A photo of Lynne McCormick

Just Ask, by Lynne McCormick

I am a person with multiple disabilities. I’m also a mom, a wife, and a preschool teacher.  First and foremost, I was born with hydrocephalus. The right hemisphere to my brain is filled with fluid. There is no gray matter. This condition leads to cerebral palsy. I have limited use of my right hand. I have almost no use of my left. My final disability is the worst. I have epilepsy. The last one gives me no independence. 

My Pain Made Me Multidimensional, by Valerie Ivy

My husband resents me. He, (Charles), won’t admit it because only a “bad” person would resent their partner for being disabled. Charles is pretty good at knowing what CC, “Cutout Charles,” should feel. So while CC “definitively does not resent me,” he does think me a hypochondriac, as does Charles. I fear my son is heading there too. Okay, I did use Dr. Google - just a smidge - because I’m still “infected,” despite finishing my antibiotic ration. But don’t worry; I realized I will die of cancer within 48 hours roughly six years ago. This is when exhaustion, pain, depression, brain fog, skin tenderness, anxiety, diarrhea and vomiting, (yes, usually at the same damn time) debilitating nerve pain and general all-over body annoyances, became my pain, no longer orphaned.

An image showing a quotation from Alicia Torres. It says, "So, how do a high-risk, almost deafblind mother and her potentially COVID-19-infected young daughter maintain social distance in a small one-bathroom bungalow? Prayer, high-powered hearing aids, clear communication, and respect,” and has a picture of Alicia Torres next to the quotation.

Life Is Not a Bowl of Cherries—It’s Empty

by Alicia Ann Torres

At the beginning of the COVID-19 pandemic, I received a phone call from my panicked brother. He said, “Get someone to help you go to the store and get food now. California is going to go on lockdown.” Bewildered and naive about the severity of the situation, I reminded my little brother that I shopped online. Once California initiated the shelter-in-place order, it was virtually impossible to get a grocery delivery online. My screen was flooded with messages about unavailable delivery dates. I tried four different companies, but none of them came through. Empty shelves and panic-buying crowds push people with physical limitations further into isolation. Although, a free social-media site, allows neighbors to offer shopping services or run errands for high-risk people, I don’t feel comfortable using it. Living alone is something I don’t publicize for safety reasons. Moreover, my relationships with my neighbors are temporary, and I don’t feel right exchanging money with them right now.

I Like Being a Mom with a Disability

In this video, Jessica Salmond, a mother with an intellectual disability, describes the ways she supports her children as a parent and activist. From the video: "And I like being a mom with a disability because I’m able to help my children with their disabilities. So, I’m able to be at their IEP meetings and understand what the IEP is about, be able to suggest different programs or different organizations. I’m also able to speak out on behalf of their disabilities and tell people what their limits are, what they can do. I also sit on disability boards to speak out on mental health and people with disabilities and children with disabilities."

A close up shot of a woman smiling brightly at the camera. She has brown skin and short straight black hair. She is wearing silver hoops and burgundy glasses. She seems happy in the photo.

I’m a Capable Mother, It Hurts to Have to Prove It

by Sequoia

Just knowing how to care for them without proof was not enough in the world’s eyes. A barrier I faced as a disabled parent is not having a custody agreement in place for my kids. This is something all parents should have, but it’s even more important for disabled parents to have because we are already seen at a disadvantage. I’m sharing my experience because no one told me that without a proper agreement in place you are assumed unfit just because you have a disability. People sometimes count us out when it comes to parenting and that is a painful reality to live through.

Dylan stands in a blazer and jeans crossing his arms and smiling at the camera. There's fall foliage behind him.

A Silent Pandemic

by Dylan Ward

I’ve been living in silence now for about two months. I am hard-of-hearing and up until recently, I wore a hearing aid in my left ear; there’s negligible residual hearing in my right ear, in which I did not wear a hearing aid. Around mid-March, I sustained an injury to the head and because of the structure of my inner ear anatomy, the injury took away the residual hearing in my left ear.

A graphic with a quote from David Preyde. It says, “Now, when you’re disabled, you are made to feel that you’re a burden. You’re made ashamed of needing things, of needing help. My wife and I call it ‘the shame of existing.’ I suspect all disabled folks have it, to a certain extent. It’s dangerous, because it’s so constant, and it’s easy to stop noticing, and it’s easy to internalize." —David Preyde, A Frantic Improvisational Game Where the Points Don’t Matter

A Frantic Improvisational Game Where the Points Don’t Matter

by David Preyde

All right, doing anything as a disabled person is bullshit. Going to get groceries is bullshit: if you’re autistic, like me, it’s too bright and too loud and too crowded. If you’re in a wheelchair, like my wife, half the food is out of reach. Walking down the street is bullshit- too loud, too crowded (for me), or nobody pays attention to you and bumps into you or blocks you (my wife). Hell, my wife almost got her ass killed trying to get off the subway, because the gap between the platform and the train was too big.

Annette sits in her house smiling at the camera.

4 Kids, Multiple Sclerosis, and COVID-19: Oh My!

by Annette (Gugu) Spinner

My son called me in August, 2019. He told me that his wife had left him and their four children. He had lost his job amongst all of the mess because he had nobody to watch the kids while he worked. He  managed to get another job and would start on the following Tuesday. 

Jenna is outside, smiling and looking directly at the camera. Black and white photo.

My Kids Have Learned Compassion and Empathy

by Jenna Pashley Smith

I’m a mom to two kids aged six and eight. My disability is largely invisible: I’ve had rheumatoid arthritis for twenty years and racked up various joint damages. My limitations change by the day: some days I feel relatively able, others I can barely walk. The unpredictability of this disease has been a challenge for my parenting from the very beginning. But as a result, this is also the only mom they’ve ever known, a mom who winces  when they reach for my hand, but also one who can sometimes turn crooked cartwheels with them. Other days, I’m the mom who limps around the house with a cherry red walker.

Sampson is looking down at the camera with a slight smile.

Life During the New Normal

by Sampson Edowe (@Siriacy_Trust)

Life during the “new normal” is being quite challenging for me, yet revealing. It has provided an ample opportunity for self-appraisal and introspection. It has also shown that what ordinarily appears unthinkable, undoable and maybe outright unrealistic is very much in the opposite. Such that I can conclude that at some point physical disabilities are not all regrettable hindrances but necessary limitations.

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