CW: Medical procedures & Ableism:
Kyla Thompson’s daughter Bella was born in 2013. She has an autoimmune disease and a form of dwarfism. Thompson originally posted updates online to keep family members informed about her daughter.
Kyla shared her updates on Facebook, blogs, and Instagram. Now, Thompson shares updates with 5.7 million followers on TikTok. Many of the videos are lighthearted, but some discuss her daughter’s health.
Thomson’s account is among the most popular in the online community of #medicalmoms, a TikTok section where mothers with disabled and chronically ill children share their parenting experiences. Videos of a premature baby getting their tracheotomy changed, a child with cystic fibrosis struggling to breathe, and a mother dancing to a popular song while lyrics detailing her child’s disabilities were shown on screen were among others that were posted.
Some parents also post videos of their children in the hospital. Others post videos of their autistic children having a meltdown. These videos show a child’s most vulnerable moments and are not meant to be viewed by millions of strangers online.
Parents say they share the videos to raise awareness. However, some disabled people argue that the practice is exploitative. A content creator named Cam knows what this feels like.
Cam’s mother posted sensitive information about her daughter for thousands of followers on Facebook to see. Among her posts are pictures of Cam following a car accident and descriptions of Cam’s preparation for a colonoscopy. Details that Cam believes are invasive and can be disturbing.
A colonoscopy is a procedure that checks the large intestine (colon) and rectum for abnormalities, such as swollen, irritated tissues, polyps, or cancer.
During a colonoscopy, a long, flexible tube (colonoscope) is introduced into the rectum. A tiny video camera at the tip of the tube allows the doctor to see the whole colon.
Polyps and other types of abnormal tissue can be removed during a colonoscopy if necessary. During a colonoscopy, tissue samples (biopsies) can also be taken.
People must empty their colon before undergoing a colonoscopy. Any residue in the colon may make getting a clear view of the colon and rectum difficult during the exam. This is typically done by taking a large volume of a laxative, either in liquid or pill form.
Annalise Caron is a clinical psychologist. She says she understands why parents post about their children online. Caron says that being the parent of a chronically ill child can be lonely. However, Caron says parents should always consider their child’s feelings before posting about them online.
Having a disability often means having little control over your autonomy. It isn’t easy to feel comfortable in your own body when you are constantly being looked at and touched by people helping you or by people who have to take measurements of the range of motion in your joints.
Sometimes, I wonder what it would be like to shower and get dressed in complete privacy. Imagine hiring a perfect stranger to help you get dressed, showered, and use the restroom. For many disabled people, this is a reality of their lives.
Growing up, I spent lots of time receiving different therapies and treatments for Cerebral Palsy. I regularly received Botox and Phenol injections and spent time in outpatient physical therapy.
At 12, I had surgery on my hamstrings. The recovery was difficult. I experienced severe muscle spasms, vomiting, and nausea, which brought me to tears. I also had an adverse reaction to Valium, which resulted in an extreme mood change. I am thankful my parents were understanding during that time.
I would have been upset and embarrassed if my parents posted pictures or videos of me online. I was completely vulnerable during my recovery. I wouldn’t want anybody to see pictures or videos of me at Children’s Hospital Boston.
Last summer, The New York Times published an article about a young woman named Sabrina, who is autistic. The article highlights Sabrina’s parent’s difficulties with caring for her at home as her needs have increased.
The New York Times only sought out the parent’s point of view when writing the article. Readers never hear from Sabrina herself. No autistic people were interviewed in the article.
When I started my blog nearly two years ago, I wanted to share my experiences as a disabled person with Cerebral Palsy. I wanted people to understand my perspective rather than reading about Cerebral Palsy from a doctor’s, physical therapist’s, or parent’s perspective. Every person with Cerebral Palsy is different, and we all have a unique outlook on life.
Disabled people should be able to tell their own stories. A disability doesn’t mean someone is automatically stripped of their autonomy. Disabled people deserve to make their own decisions because they are human.
Sources:
Carling, Linda Z. “The New York Times Should Know Better: Why the Article They Published on an Autistic Child’s Meltdowns Is Not Okay.” JHU School of Education, Johns Hopkins University , 7 June 2022, education.jhu.edu/2022/06/the-new-york-times-should-know-better/.
“Colonoscopy.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 18 May 2022, http://www.mayoclinic.org/tests-procedures/colonoscopy/about/pac-20393569.
Latifi, Fortesa. “‘Medical Moms’ Share Their Kids’ Illnesses with Millions. at What Cost?” The Washington Post, WP Company, 11 May 2023, http://www.washingtonpost.com/parenting/2023/05/11/tiktok-medical-mamas/.