Intelligence goes be­yond mo­tor skills

We should not be so quick to write off the lives of dis­abled peo­ple, writes Anne McDon­ald

The Weekend Australian - Travel - - Health -

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’sCom­ingOut , 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 lives in Melbourne, and writes and speaks on dis­abil­ity is­sues. She may be con­tacted through her web­site: http://home.vic­ Anne2.htm

Pic­ture: Chris Crerar

In­sipi­ra­tion: Anne McDon­ald spent years in­sti­tu­tion­alised, un­able to com­mu­ni­cate

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