• Janine Bolton says Daryl-Ann loves being on the trampoline with her, but she's concerned that wouldn't be possible if she grew any bigger. (SBS Dateline)
What kind of life is growth attenuation preventing these young people from having, asks disability advocate Carly Findlay.
By
Carly Findlay

24 Jun 2016 - 11:06 AM  UPDATED 24 Jun 2016 - 12:31 PM

Earlier this week, Dateline followed two New Zealand families who made the controversial decision to stunt their severely disabled children's growth through growth attenuation treatment.

Rob Fehsenfeld and Janine Bolton are parents of nine year old Daryl-Ann, and Suzi Paisley is a single mum to 12 year old Kahn - both children require round the clock care. They have used prescribed, high dosage hormones (oestrogen) to bring on an early and fast puberty in Daryl-Ann who has cerebral palsy and microcephalyand Kahn who has cerebral palsy spastic quadriplegia. This means Daryl-Ann and Kahn's growth plates have closed, and they stop growing. The children will never grow to their full adult height.

Their parents believe keeping their children small helps with ease of mobility for caregivers, and the improved ability to bond without using hoists and wheelchairs. 

However, many people believe this practice is unethical and a breach of the children's human rights.

The late Anne McDonald, who lived through her own growth stunting, said it took away her right to consent and have a say over her own body. She said "I may be the only person on Earth who can say, 'Been there. Done that. Didn't like it. Preferred to grow'."

Growing Pains
Should parents have the right to stunt the growth of their severely disabled child to make them more physically manageable? Dateline explores the controversial debate in New Zealand and beyond.

The impact of the children's disabilities on these families is enormous, but is it enough of a reason to take away their autonomy and identity?

Kelly Vincent, a South Australian MP representing the Dignity for Disability Party, who lives with a disability, has spoken out against the practice of growth attenuation treatment in Parliament.

Ms Vincent says she believes it is an extreme measure that wouldn't be done to anyone without a disability in present day. "It potentially contravenes the United Nations Convention on the rights of Persons with Disabilities, particularly the articles about people with disabilities having the right to the same healthcare provisions as all other people, and the right to bodily integrity."

In 2006, Seattle woman Ashley X had growth attenuation treatment at the age of nine, and her parents have documented this on their website. The website  states Ashley's quality of life has improved, and it has resulted in easier mobility for her care givers. A hysterectomy has stopped menstruation and the chance of pregnancy, and breast bud removal has meant Ashley's breasts haven't grown, and this "avoid[s] sexualisation towards [the] caregiver".

Ashley is known as a pillow angel - an infantalising term for the children who have been forced to never grow up.

In an email interview, Ashley's dad (who is only known as AD), told me Ashley has the body of a nine year old. He told me Ashley's intellect is "at infant level" and that her future quality of life won't be affected by her stunted growth.

The Pillow Angel website features testimonies and wishes from other parents. I asked Ashley's dad if any parents he's been in contact with have regretted their decision to force growth attenuation treatment on their disabled children. "Not a single parent expressed regrets out of the 35 or so families we are in contact with through the support group," he says. He also says if he was disabled, he'd choose the Ashley treatment. He believes he's done the best for his child and his family.

I despaired learning about Daryl-Ann, Kahn and Ashley, and others like them. I wondered, if they could, would they want to have a say in the way their bodies have been altered? Would they want to feel tall, or experience periods or have the chance to bear children? The late Stella Young said, "While simply possessing a uterus doesn’t make you a woman, having yours taken from you without your consent can certainly cause you to question your identity and security."

I agree. The belief that people with disabilities have less rights, particularly around what happens to their body is concerning. Why do these children not have the same rights as other children to grow up? They are desexualised before they have the chance to learn about or experience their sexual identity.

These children are frozen in a perpetual child-like state, perpetuating the infantilisation and low expectation of people with disabilities. Like the families featured in Dateline, the treatment is done with love and lots of consideration. But it reinforces the idea that people with severe disabilities shouldn't be afforded the growth and development opportunities, and the choice and dignity that non-disabled people are privileged to have.

While her experience of stunted growth was due to neglect rather than medical intervention, Anne McDonald had a life similar to these children. She was diagnosed as being profoundly disabled when she was three, and spent 14 years in a Melbourne institution. Like Ashley, Anne had static encephalopathy. She was unable to walk, talk or feed herself, and was not given the nutrition she needed to grow and thrive.

After Ashley's parents discouraged people from commenting unless they are "fully living the experience", Anne wrote a response to the pillow angel debate in the Seattle PI.

"I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child," she wrote.

In some cases, people with disabilities are not given the chance to show their full potential because of the prejudice towards them.

"Unlike Ashley, my growth was 'attenuated' not by medical intervention but by medical neglect. My growth stopped because I was starved. St. Nicholas offered little food and little time to eat it - each staff member had 10 children with severe disabilities to feed in an hour. That was the roster set by the state and accepted by the medical profession. Consequently my growth stopped shortly after admission. When I turned 18, I weighed only 35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall."

"My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years."

Anne McDonald's book, Annie's Coming Out , co-written with Rosemary Crossley, gives a bleak example of the low expectations caregivers and wider society often had for people with disabilities in the 1960s and 70s. Anne desperately wanted people to know she was more than her disability.

“I rusted away in St Nicholas until Rosemary showed me that some people did know our helpless bodies could contain a mind, even if she did not realise we could be normal... I needed a way of telling people that I knew more than they thought I knew," she wrote.

Reading about Anne's experience made me ask the question: what kind of life is growth attenuation preventing these young people from having? And I wonder whether there is more support they could get, given increased technology to facilitate communication, and also better disability support systems such as the NDIS?

Kelly Vincent believes the NDIS is a start, but more is needed.

"Dollars and resources alone won't fix the issue however - we need more awareness and better understanding of diversity in society. This includes recognising the varying needs, perspective and experience people with disability bring to our schools, our workplaces and other facets of the community," Kelly says.

Anne McDonald's story made me realise that in some cases, people with disabilities are not given the chance to show their full potential because of the prejudice towards them. In her case, it was assumed that she had the intellect of an infant, forever had it not been for facilitated communication. She was genuinely inspiring. The institution she was raised in believed she had limited capacity, until she was given a chance to communicate. Rosemary Crossley saw her potential when she was 16.

I only wish parents, medical staff and support workers come to know about Anne, and investigate all support options before making the drastic decision to prevent a disabled child from growing up.

Carly Findlay is a writer, speaker, performer and appearance activist. 

Watch the Dateline episode, Growing Pains, on SBS On Demand:

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