(TW: Ableism, Medical Abuse, Neglect, ED (Weight), Ableist Language)
Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents’ request, given a medical treatment called “growth attenuation” to prevent her growing. She had her uterus removed, had surgery on her breasts so they would not develop and was given hormone treatment. She is now known by the nickname her parents gave her — Pillow Angel.
The case of Ashley hit the media in January after publication of an article in a medical journal about her treatment. It reappeared in the news recently because of the admission by Children’s Hospital and Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only with the consent of a court.
At the time of the initial publicity about growth attenuation, Ashley’s parents wrote on their blog: “In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.”
I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s.
TW: Ableism, Medical Abuse, Institutionalization
The last time Doris Freyre saw her 14-year-old daughter, Marie, alive was around 1 p.m. on April 26. She watched helplessly as the disabled girl was strapped to a stretcher and sent by ambulance to a nursing home in Miami — five hours away from their home in Tampa, Fla.
Florida child welfare authorities had deemed Freyre, a 59-year-old single mother with six herniated discs and carpal tunnel syndrome in both her wrists, unable to take care of Marie, who had cerebral palsy and suffered from life-threatening seizures.
Marie, who was in state custody despite pleas from her mother that she could better care for her daughter at home, died alone just 12 hours later on April 27 — dehydrated and not properly medicated — of cardiac arrest, according to a Miami Herald investigation.
Neither a nurse nor a social worker accompanied the screaming girl en route to the institution. And her mother was not allowed to ride with the girl, who could not talk and had a rigid medication routine.
I have Cerebral Palsy and I’m the only one in my family that has this disability. While my family is supportive, sometimes I feel that they don’t truly ‘understand’. (Ex: laughing when I startle, making loud noises to make me jump then laugh like it’s a joke etc etc.) I also get told a lot that ‘I’m too young to have that’ or that ‘I’m a hypochondriac’ when I mention something pertaining to my disability. I eventually stopped altogether and just stayed quite about it. So frustrating.-anon
I don’t have CP, but I definitely feel you about no one in your family understanding! It’s so difficult when the people who should be your primary support system don’t listen to you or respect what you tell them about your own condition and your own body. Especially for us as disabled people, since often we’re isolated from both society and from other disabled people that we end up relying even more on our families.
I’m wondering, for some of the more egregious remarks here (like “you’re too young to have that,” ugh) if you might consider taking them in for a meeting with your doctor to discuss the realities of your CP and what kind of support you need from them? Of course, this may not help, and if you don’t have a doctor whom you trust and like it likely wouldn’t be worth it.
I’m sorry this response is so late, by the way. I posted it in drafts by accident instead of the queue and just found it! Please feel free to right in anytime to vent <3