Anne McDonald: Intelligence goes beyond motor skill

 July 07, 2007
Article from: The Australian

THREE years ago, a six-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 headlines 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 the Seattle 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 sterilised 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.

Like Ashley, I too have a static encephalopathy. Mine was caused by brain
damage at the time of my breech birth. Like Ashley, I can't walk, talk, feed
or care for myself. My motor skills are those of a three-month-old.

When I was three, a doctor assessed me as severely retarded (that is, as
having an IQ of less than 35) and I was admitted to a state institution
called St Nicholas Hospital in Melbourne. As the hospital didn't provide me
with a wheelchair, I lay in bed or on the floor for most of the next 14
years.

At the age of 12, I was relabelled as profoundly retarded (IQ less than 20)
because I still hadn't learned to walk or talk. Like Ashley, I have
experienced growth attenuation. I may be the only person on Earth who can
say "Been there. Done that. Didn't like it. Preferred to grow.''

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.

In the ultimate catch-22, the hospital doctors told the Supreme Court that
my small stature was evidence of my profound mental retardation. I've
learned the hard way that not everything doctors say should be taken at face
value.

After I left the institution, an X-ray showed that I had a bone age of about
six, a growth delay almost unheard of in an 18-year-old in the developed
world.

I was not only tiny, but lacked any secondary sexual characteristics (a
significant difference from people with naturally small stature). I was a
legal adult, but I couldn't see over a bar, much less convince anyone to
serve me a drink. I didn't see small stature as desirable.

My new doctors said that presumably I had the growth potential of a
six-year-old, so my new caregivers and I worked on increasing my size. My
contribution was to eat everything I was offered. It worked. I started
growing immediately, reaching a final height of 5 feet and weight of 120
pounds. That is, I grew 18 inches after the age of 18. Along the way I lost
my milk teeth and reached puberty.

At the age of 19, I attended school for the first time, eventually
graduating from university with majors in philosophy of science and fine
arts. Annie's Coming Out, the book about my experiences that I wrote with my
teacher, was made into a movie that won Best Film at the 1984 Australian
Film Institute Awards. Unlike Ashley, I'm now an ordinary height and weight
- but I don't get left out, nonetheless. Though I still can't walk, talk or
feed myself, I'm an enthusiastic traveller. My size has never got in the
way, though my hip flask of Bundy rum often causes alarm at airport
security.

I love New York for its galleries, its shops and its theatres; hearing
Placido Domingo at the Met was one of the highlights of my life.
Interestingly, Ashley is also reported as enjoying opera - maybe it goes
with the turf.

Many otherwise reasonable people think that growth attenuation was an
appropriate treatment for Ashley. In an Op-Ed piece in The New York Times,
for example, moral philosopher Peter Singer wrote: " ... there is the issue
of treating Ashley with dignity ... But why should dignity always go
together with species membership, no matter what the characteristics of the
individual may be? ... Lofty talk about human dignity should not stand in
the way of children like her getting the treatment that is best both for
them and their families.''

Ironically, I'm a friend of Peter's, and I've discussed ethics and
disability with him previously. Despite this, he obviously didn't call me to
mind when he wrote about Ashley.

This may be because Ashley is described as having static encephalopathy, a
rather uncommon name for a rather common condition. Static encephalopathy
just means "brain damage which isn't going to get worse''. It's occasionally
used as a euphemism for brain damage caused by maternal intoxication, but
the most common form of the condition is cerebral palsy unrelated to
maternal intoxication. Ashley and I both have cerebral palsy.

Ashley's doctors may have used the term static encephalopathy to avoid the
outcry that would have followed if people realised that it was being
suggested that girls with cerebral palsy should have surgery to stunt their
growth and prevent puberty. When Singer wrote that "Ashley is 9, but her
mental age has never progressed beyond that of a 3-month-old. She cannot
walk, talk, hold a toy or change her position in bed. Her parents are not
sure she recognises them. She is expected to have a normal lifespan, but her
mental condition will never improve,'' he has accepted the doctors' eyeball
assessment of Ashley without asking the obvious questions.

What was their assessment based on? Has Ashley ever been offered a way of
showing that she knows more than a 3-month-old baby? Only someone like me,
who has lain in a cot year after year hoping that someone would give her a
chance, can know the horror of being treated as if you were totally without
conscious thought.

Given that Ashley's surgery is irreversible, I can only offer sympathy to
her and her parents. For her sake, I hope she does not understand what has
happened to her; but I'm afraid she probably does. As one who knows what
it's like to be infantilised because I was the size of a four-year-old at
age 18, I don't recommend it.

My ongoing concern is the readiness with which Ashley's parents, doctors and
most commentators assumed they could make an accurate estimation of the
understanding of a child without speech who has severely restricted
movement. Any assessment of intelligence that relies on speech and motor
skills cannot conceivably be accurate because the child doesn't have any of
the skills required to undertake testing. To equate intelligence with motor
skills is as absurd as equating it with height.

The only possible way to find out how much a child who cannot talk actually
understands is to develop an alternative means of communication for that
child. An entire new discipline of non-speech communication has developed
since I was born in 1961, and there are now literally hundreds of non-speech
communication strategies available. Once communication is established,
education and assessment can follow, in the usual way.

No child should be presumed to be profoundly retarded because she can't
talk. All children who can't talk should be given access to communication
therapy before any judgments are made about their intelligence.

Ashley's condemned to be a Peter Pan and never grow, but it's not too late
for her to learn to communicate. It's profoundly unethical to leave her on
that pillow without making every effort to give her a voice of her own.

***

Anne McDonald, who passed away in 2010 lived in Melbourne where she wrote and spoke on disability
issues. She may be contacted through her website:

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