Cel­e­brate their dif­fer­ence

The Weekend Australian - Review - - Books - Jo Case’s

keep say­ing, ‘ I don’t know how you do it’,’’ says the ex­hausted mother of an autis­tic child. ‘‘ It’s not like I can wake up and say, ‘ I don’t think I’ll deal with it any more’.’’

Most of the par­ents in­ter­viewed are pos­i­tive about their ex­pe­ri­ences; given the choice, they would not rewrite the past. Solomon sug­gests the book is self-se­lect­ing: those who are bit­ter are less likely to bare their lives for an in­ter­viewer. But the bal­ance also re­flects his aim: ‘‘ The dif­fi­cul­ties such par­ents face have long been ac­knowl­edged by the out­side world; only re­cently have the plea­sures be­come a topic for gen­eral con­ver­sa­tion.’’

In­hab­it­ing many of th­ese dif­fer­ences is bet­ter to­day than it has ever been, with the rise of ac­tivism, med­i­cal im­prove­ments and the in­ter­net’s abil­ity to con­nect peo­ple with their peers. (Not to men­tion con­tem­po­rary so­ci­ety’s in­creased tol­er­ance of dif­fer­ence.)

Iron­i­cally, tech­no­log­i­cal ad­vance­ments such as ge­netic map­ping and pre­na­tal test­ing si­mul­ta­ne­ously put th­ese iden­ti­ties at risk. Roughly 70 per cent of women who dis­cover Down syn­drome in pre­na­tal test­ing choose to abort. The ac­tivist deaf com­mu­nity re­gards the cochlear im­plant as akin to geno­cide, of­fer­ing an in­fe­rior alternative to a rich deaf cul­ture. ‘‘ Ba­si­cally, with aids you’re con­stantly trans­lat­ing ev­ery line of lan­guage into it­self,’’ says one man who tried and aban­doned hear­ing aids. ‘‘ Like the high-school sopho­more at the col­lege bar with a great fake ID, I could fool ev­ery­one into be­liev­ing I was who I pre­tended to be.’’

Is it bet­ter to get by in the main­stream world, with ef­fort, but al­ways be aware of not quite fit­ting in, or to re­lax into your nat­u­ral self in a mar­ginal world?

This ques­tion, along with the shift­ing cat­e­gor­i­cal bor­der be­tween ill­ness (im­ply­ing the need for cure) and iden­tity (im­ply­ing ac­cep­tance) runs through­out this book.

The ex­is­tence of cures such as the cochlear im­plant, or meth­ods of avoid­ing dis­abil­ity such as pre­na­tal test­ing, im­pose a dan­ger­ous bur­den of choice. Solomon pre­dicts a fu­ture where par­ents who de­cide not to avail them­selves of th­ese ad­vance­ments may be seen as hav­ing cre­ated their own chal­lenges and may for­feit their right to dis­abil­ity sta­tus.

One area at the front­line of this quandary is the de­ci­sion of par­ents un­der­tak­ing IVF to choose se­lec­tively foe­tuses bear­ing dis­abled genes, so as to have chil­dren like them­selves. ‘‘ You can­not tell me that I can­not have a child who’s go­ing to look like me,’’ says one, a dwarf. ‘‘ It’s just un­be­liev­ably pre­sump­tu­ous.’’

Bring­ing to­gether th­ese di­verse com­mu­ni­ties of dif­fer­ence, Solomon un­cov­ers sur­pris­ing con­nec­tions and sim­i­lar­i­ties. Some cat­e­gories — prodi­gies, chil­dren of rape, chil­dren of crim­i­nals — spark fewer con­nec­tions than oth­ers, but those they do make are wel­come. For ex­am­ple, the high in­tel­li­gence of prodi­gies alien­ates them from their main­stream peers as ef­fec­tively as the low in­tel­li­gence of Down syn­drome chil­dren does; many of them also fit the cri­te­ria for the autis­tic spec­trum.

Far from the Tree is a stel­lar ex­am­ple of the kind of so­ci­o­log­i­cal, re­portage-based non­fic­tion that Amer­i­cans seem to do par­tic­u­larly well. ‘‘ Num­bers im­ply trends, while sto­ries ac­knowl­edge chaos,’’ writes Solomon of his ap­proach.

He has sifted through the chaos to find a kind of sense in it, but has just left it just ragged enough that there are still am­ple dis­cov­er­ies for the reader to make.

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