Involvement and detachment in intellectual disability studies

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1 INVOLVEMENT AND DETACHMENT IN INTELLECTUAL DIS AB ILITY S TUDIES B y M a r c e l C a l v e z L a b o r a t o i r e d a n t h r o p o l o g i e e t d e s o c i o l o g i e , U F R S c i e n c e s S o c i a l e s U n i v e r s i t é R e n n e s 2 C S 2 4 3 0 6 , 6 A v . G a s t o n B e r g e r , F –3 5 0 4 3 R e n n e s C edex E-m a il : M arcel.calvez@ uhb.fr A b s t r a c t : Attention given to the role of researchers in q u alitative m ethod s q u estions the cond itions of production of knowledge on the experience of persons with intellectual disabilities. The inv olv em ent of researchers has to be discussed regarding their interactions with m em bers of a m uted group labelled as hav ing social and com m unicativ e incom petence. The article discusses the interest of first person researchers’ texts in the approach to the social experience of intellectual disability . I t adv ocates a reasonable use of personal accounts of research to explain the conditions of production of knowledge and dev elop com parability between studies. What can be said of what people say of wha t the y a re a n d wha t the y d o ? R esearchers u s i n g q u a l i t a t i v e m e t hods inevitably address t his issue when carrying out interviews in o r d e r t o a c c o u n t fo r t he experience i n t e r v i e wees have of the social and cultural c o n t e x t i n whi c h t he y live. Wi t h t he d e v e l o p m e n t o f texts using the first person a n d g i v i n g e x t e n s i v e a c c o u n t s o f t he i n t e r a c t i o n s b e t ween researchers and those u n d e r s t u d y , t his issue has gained new fa c e t s . R esearch accounts suggest tha t k n o wle d g e cannot be dissociated fr o m i n d i v i d u a l s c o n s t r u c t i n g i t , e i t her in their m e t ho d o lo g ic a l and theoretical c ho ic e s g o v e r n i n g t he collection and production of d a t a , o r i n t he interpretation of inform ation c o l l e c t e d i n t he r e s e a r c h p r o c e s s . H owever, s o m e o f these accounts go far beyond the i d e n t i fication of personal factors perm eating t he re s e a rc h p ro c e s s . T he y c o n v e y c la im s fo r a p e r s o n a l i n v o l v e m e n t o f researchers in t heir stu d ies an d ten d to d en y the p ossibility o f an analysis of situations external to their o wn experience. A s an exam ple, one would n e e d t o b e H I V p o s i t i v e t o d e v e l o p a r e l e v a n t a n a l y s i s o f t he e x p erien ce o f p eople wi t h A ids, or hom osexual to write cogently o n p e r c e p t i o n s o f A ids risks. To a certain p o i n t , t he im portance given to t he i n v o l v e m e n t o f researchers as participant in s i t u a t i o n s t he y study questions t he p o s s i b i l i t y o f studying dom a i n s whi c h a r e o u t s i d e t he ir p r iv a te experience. T he issue of the personal experience of r e s e a r c hers is p a rtic u la rly c ru c ia l in t he case halshs-00006063, version 1 - 23 Nov 2005 Author manuscript, published in "N/P"

Transcript of Involvement and detachment in intellectual disability studies

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INVOLVEMENT AND DETACHMENT IN INTELLECTUAL DIS AB ILITY S TUDIES B y M a r c e l C a l v e z L a b o r a t o i r e d ’ a n t h r o p o l o g i e e t d e s o c i o l o g i e , U F R S c i e n c e s S o c i a l e s U n i v e r s i t é R e n n e s 2 C S 2 4 3 0 6 , 6 A v . G a s t o n B e r g e r , F –3 5 0 4 3 R e n n e s C e d e x E-m a i l : M a r c e l . c a l v e z @ u h b . f r

A b s t r a c t : Attention given to the role of researchers in q u alitative m ethod s q u estions the cond itions of production of knowledge on the experience of persons with intellectual disabilities. The inv olv em ent of researchers has to be discussed regarding their interactions with m em bers of a m uted group labelled as hav ing social and com m unicativ e incom petence. The article discusses the interest of first person researchers’ texts in the approach to the social experience of intellectual disability . I t adv ocates a reasonable use of personal accounts of research to explain the conditions of production of knowledge and dev elop com parability between studies.

Wha t c a n b e s a i d o f wha t p e o p l e s a y o f wha t t he y a r e a n d wha t t he y d o ? R e s e a r c he r s u s i n g q u a l i t a t i v e m e t ho d s i n e v i t a b l y a d d r e s s t hi s i s s u e whe n c a r r y i n g o u t i n t e r v i e ws i n o r d e r t o a c c o u n t fo r t he e x p e r i e n c e i n t e r v i e we e s ha v e o f t he s o c i a l a n d c u l t u r a l c o n t e x t i n whi c h t he y l i v e . Wi t h t he d e v e l o p m e n t o f t e x t s u s i n g t he fi r s t p e r s o n a n d g i v i n g e x t e n s i v e a c c o u n t s o f t he i n t e r a c t i o n s b e t we e n r e s e a r c he r s a n d t ho s e u n d e r s t u d y , t hi s i s s u e ha s g a i n e d n e w fa c e t s . R e s e a r c h a c c o u n t s s u g g e s t t ha t k n o wl e d g e c a n n o t b e d i s s o c i a t e d fr o m i n d i v i d u a l s c o n s t r u c t i n g i t , e i t he r i n t he i r m e t ho d o l o g i c a l a n d t he o r e t i c a l c ho i c e s g o v e r n i n g t he c o l l e c t i o n a n d p r o d u c t i o n o f d a t a , o r i n t he i n t e r p r e t a t i o n o f i n fo r m a t i o n c o l l e c t e d i n t he r e s e a r c h p r o c e s s . H o we v e r ,

s o m e o f t he s e a c c o u n t s g o fa r b e y o n d t he i d e n t i fi c a t i o n o f p e r s o n a l fa c t o r s p e r m e a t i n g t he r e s e a r c h p r o c e s s . T he y c o n v e y c l a i m s fo r a p e r s o n a l i n v o l v e m e n t o f r e s e a r c he r s i n t he i r s t u d i e s a n d t e n d t o d e n y t he p o s s i b i l i t y o f a n a n a l y s i s o f s i t u a t i o n s e x t e r n a l t o t he i r o wn e x p e r i e n c e . A s a n e x a m p l e , o n e wo u l d n e e d t o b e H I V p o s i t i v e t o d e v e l o p a r e l e v a n t a n a l y s i s o f t he e x p e r i e n c e o f p e o p l e wi t h A i d s , o r ho m o s e x u a l t o wr i t e c o g e n t l y o n p e r c e p t i o n s o f A i d s r i s k s . T o a c e r t a i n p o i n t , t he i m p o r t a n c e g i v e n t o t he i n v o l v e m e n t o f r e s e a r c he r s a s p a r t i c i p a n t i n s i t u a t i o n s t he y s t u d y q u e s t i o n s t he p o s s i b i l i t y o f s t u d y i n g d o m a i n s whi c h a r e o u t s i d e t he i r p r i v a t e e x p e r i e n c e .

T he i s s u e o f t he p e r s o n a l e x p e r i e n c e o f r e s e a r c he r s i s p a r t i c u l a r l y c r u c i a l i n t he c a s e

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o f r e s e a r c h o n t he c o n d i t i o n o f p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s . A s , b y t he s o c i a l d e fi n i t i o n o f t he i r c o m p e t e n c e a n d a c t i v i t y , r e s e a r c he r s wi l l n e v e r s ha r e t he e x p e r i e n c e o f i n t e l l e c t u a l d i s a b i l i t y , a r a d i c a l s e p a r a t i o n t a k e s p l a c e a n d q u e s t i o n t he p r e -r e q u i s i t e o f t he i r p e r s o n a l i n v o l v e m e n t . I n i n t e r v i e ws , r e s e a r c he r s a r e a l s o c o n fr o n t e d wi t h p r o b l e m s o f c o m m u n i c a t i o n s e l d o m e n c o u n t e r e d i n o t he r r e s e a r c h s i t u a t i o n s : fo r e x a m p l e , wi t h r e fe r e n c e t o s t u d i e s I c o n d u c t e d wi t h p e o p l e l i v i n g p r e v i o u s l y i n s p e c i a l i n s t i t u t i o n s , a l i m i t e d v e r b a l c a p a c i t y t o e x p r e s s s i t u a t i o n s a n d e m o t i o n s , a n a b s e n c e o f c o n t i n u i t y i n t he d i a l o g u e , m y p e r c e p t i o n o f t he i r r e l e v a n c e o f s o m e o f t he i r e x p r e s s i o n s , t he i r d i ffi c u l t y t o r e fe r t o t he m s e l v e s a s p e r s o n s d i s t i n c t fr o m t he s p e c i a l i n s t i t u t i o n , e t c .. T he s e p r o b l e m s a r e i n n o wa y c o m p a r a b l e t o t ho s e m e t b y r e s e a r c he r s s t u d y i n g d i s t a n t c u l t u r e s a s r e s e a r c he r s a n d t ho s e u n d e r s t u d y l i v e i n t he s a m e s o c i e t y , r e fe r t o t he s a m e l a n g u a g e a n d c u l t u r a l m e a n i n g s e v e n i f t he i r r e s p e c t i v e p o s s i b i l i t i e s a n d c o n d i t i o n s o f u t i l i s a t i o n o f t he s o c i a l a n d c u l t u r a l r e s o u r c e s a r e r a d i c a l l y d i ffe r e n t . I n s u c h s i t u a t i o n s , r e s e a r c he r s ha v e t o u s e t he i r o wn i n t e l l e c t u a l r e s o u r c e s t o i n t e r p r e t a n d t o m a k e s e n s e o f t he m a t e r i a l c o l l e c t e d d u r i n g t he s t u d y . I f o n e fo l l o ws t he c l a i m fo r a n i n n e r e x p e r i e n c e a s a c o n d i t i o n o f v a l i d i t y o f t he a n a l y s i s , i n t he i r t e x t s o n i n t e l l e c t u a l d i s a b i l i t y , whe t he r t he y u s e t he fi r s t p e r s o n o r n o t , r e s e a r c he r s wo u l d o n l y a c c o u n t fo r t he i r p e r s o n a l m e e t i n g wi t h i n t e l l e c t u a l d i s a b i l i t y . T he e x p e r i e n c e o f d i s a b l e d p e o p l e wo u l d r e m a i n a “ t e r r a i n c o g n i t a ” fo r s o c i a l s c i e n c e s , s i n c e t he y ha v e n o s p o k e s p e r s o n s

o f t he i r o wn . F o r m u l a t e d i n t hi s wa y , t he i s s u e l e a d s i n e v i t a b l y t o a d e a d -e n d r e g a r d i n g t he p r o d u c t i o n o f k n o wl e d g e o n t he e x p e r i e n c e o f p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s .

I n o p p o s i t i o n t o t hi s r a d i c a l e p i s t e m o l o g y , I a r g u e t ha t a p e r s o n a l e x p e r i e n c e a s p a r t i c i p a n t d o e s n o t g i v e r e s e a r c he r s a b e t t e r i n s i g ht o f t he i r s t u d y i f t he y d o n o t ha v e t he t he o r e t i c a l fr a m e s i n whi c h t he o b s e r v a t i o n s a n d i n t e r v i e ws t he y c o l l e c t b e c o m e s o c i o l o g i c a l l y s i g n i fi c a n t . I t i s p o s s i b l e t o p r o d u c e a r e l e v a n t a n a l y s i s o f t he e x p e r i e n c e o f p e r s o n s wi t h i n t e l l e c t u a l d i s a b i l i t i e s , p r o v i d e d t ha t t he o r e t i c a l a n d m e t ho d o l o g i c a l e ffo r t s a r e m a d e t o g i v e s e n s e t o wha t t he y s a y . T hi s a s s u m p t i o n r e q u i r e s r e g a r d i n g t he i r e x p e r i e n c e n o t i n i t s p r i v a t e d i m e n s i o n s , b u t i n i t s s o c i o l o g i c a l d i m e n s i o n s , i .e . i n t he u t i l i s a t i o n o f u n i t s o f c u l t u r e t o o r i e n t a t e a n d t o g i v e m e a n i n g s t o a c t i v i t y i n r e l a t i o n t o o t he r s . A s r e s e a r c he r s m e e t s p e c i fi c p r o b l e m s i n t he i r fi e l d wo r k , t he i r i n fl u e n c e o n t he c o u r s e o f r e s e a r c h n e e d s t o b e d i s c u s s e d r e g a r d i n g t he i r p o s s i b i l i t i e s t o r e p r o d u c e c u l t u r a l s t e r e o t y p e s o n p e r s o n s wi t h i n t e l l e c t u a l d i s a b i l i t i e s . T he i r p e r s o n a l a c c o u n t s a r e o f g r e a t i n t e r e s t i n s o fa r a s t he y d i s p l a y t he c o n d i t i o n s o f c o l l e c t i o n o f fi r s t ha n d m a t e r i a l a n d t he wa y t he a n a l y s i s i s g r a d u a l l y c o n s t r u c t e d . T he n , wha t p e o p l e s a y i s p u t i n t o m e t ho d o l o g i c a l a n d t he o r e t i c a l c o n t e x t a n d r e n d e r e d k n o wa b l e

T o d e v e l o p t hi s a r g u m e n t , I wi l l s t a r t b y p r e s e n t i n g t he c o n t e x t o f u s e o f t he fi r s t p e r s o n i n s o c i o l o g i c a l t e x t s , t o d i s c u s s t he

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n e c e s s i t y o f a b a l a n c e b e t we e n i n v o l v e m e n t a n d d e t a c hm e n t t o p r o d u c e a s c i e n t i fi c d i s c o u r s e o n s o c i a l e x p e r i e n c e . I wi l l t he n r e fe r t o t he a p p r o a c h t o i n t e l l e c t u a l d i s a b i l i t y a s a m u t e d g r o u p t o s t r e s s t he i m p o r t a n c e g i v e n t o t he d i s c u s s i o n o f t he r o l e o f r e s e a r c he r s b e c a u s e i n s p e a k i n g m o r e o f t he m s e l v e s , a s fi r s t p e r s o n t e x t s u s u a l l y d o , t he y c a n r e p r o d u c e t he s o c i a l a n d c u l t u r a l s i l e n c i n g o f t he p e o p l e t he y s t u d y . R e fe r r i n g t o m y r e s e a r c h e x p e r i e n c e , I wi l l l a s t l y s u g g e s t a r e a s o n a b l e u s e o f p e r s o n a l a c c o u n t s c e n t r e d o n fi e l d wo r k i n o r d e r t o e x p l a i n t he c o n d i t i o n s o f a n a l y s i s o f t he s o c i a l a n d c u l t u r a l e x p e r i e n c e o f i n d i v i d u a l s wi t h i n t e l l e c t u a l d i s a b i l i t i e s .

First person texts and involvement in researc h

C o m p a r e d wi t h t he b e g i n n i n g s o f s o c i o l o g y a s a s c i e n t i fi c d i s c o u r s e , t he p l a c e t a k e n n o w b y t he fi r s t p e r s o n i n s o c i o l o g i c a l t e x t s i s s i g n i fi c a n t o f c ha n g e s i n t he i m p l i c a t i o n o f r e s e a r c he r s i n t he i r a c t i v i t y . A m o n g t he s e c ha n g e s , o n e ha s c e r t a i n l y d e r i v e d fr o m t he e x t e n s i v e u s e o f fa c e -t o -fa c e i n t e r v i e ws t o c o l l e c t q u a l i t a t i v e i n fo r m a t i o n . I n s p i r e d b y t he p s y c ho l o g i c a l i n t e r v e n t i o n , t hi s m e t ho d i s b a s e d o n e m p a t hy a n d q u e s t i o n s i n e v i t a b l y t he p a r t i c i p a t i o n o f r e s e a r c he r s i n t he p r o d u c t i o n o f d a t a . A n o t he r c ha n g e c o m e s fr o m t he g e n e r a l i s a t i o n o f t he e t hn o l o g i c a l a p p r o a c h t o o u r s o c i e t i e s . T he d i s c u s s i o n o f t he

r e l a t i o n s hi p t o d i s t a n t o t he r s , a s a n e p i s t e m o l o g i c a l n e c e s s i t y t o o b j e c t i fy t he i r c u l t u r e , c o m e s e v e n m o r e c r u c i a l whe n s t u d y i n g n e a r o t he r s . H o we v e r , t he u s e o f fi r s t p e r s o n c a n n o t b e r e d u c e d t o t he c o n s e q u e n c e s o f t he d e v e l o p m e n t o f m e t ho d s i n s o c i a l s c i e n c e s . I t a l s o e x p r e s s e s c ha n g e s r e g a r d i n g t he p l a c e o f r e s e a r c he r s i n t he r e s e a r c h p r o c e s s .

The first person between authenticity and reflexiv ity

T wo d i m e n s i o n s a p p e a r e s s e n t i a l a n d m a k e i t p o s s i b l e t o d e l i m i t t he v a r i o u s r e fe r e n c e s t o r e s e a r c he r s a s fi r s t p e r s o n s i n s o c i o l o g i c a l t e x t s .

O n t he o n e ha n d , t he u s e o f t he fi r s t p e r s o n e x p r e s s e s a r e q u i r e m e n t o f a u t he n t i c i t y : t he e n g a g e m e n t o f t he a u t ho r m a k e s t r u e wha t i s s a i d . A c c o r d i n g t o R . S e n n e t t ( 1 9 7 7 ) , t hi s r e q u i r e m e n t o f a u t he n t i c i t y c o m e s wi t hi n t he g r e a t c u l t u r a l t r a n s fo r m a t i o n s o f t he 1 9 t h c e n t u r y t ha t ha v e r e s u l t e d i n t he d e a t h o f p u b l i c s p a c e a n d t he d e v e l o p m e n t o f a n i n t i m a t e v i s i o n o f t he wo r l d . H e d e s c r i b e s t hi s v i s i o n a s n a r c i s s i s t i c . “ This desire to rev eal one' s personality in social dealings, and to social m easure action itself in term s of what it shows of the personalities of others [ … ] is first a desire to authenticate oneself as a social actor through display of one’ s personal q ualities. W hat m akes an action good ( that is, authentic) is the character of those who engage in it, not the action itself.” H e c o n s i d e r s t ha t t he a r t i c l e

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“ J ’ a c c u s e ” , wr i t t e n b y Z o l a i n 1 8 9 8 i n c o n n e c t i o n wi t h t he D r e y fu s A ffa i r i n F r a n c e , i s t he fi r s t g r a n d t e x t c o n c e r n e d b y p u b l i c i s s u e s i n whi c h s i n c e r i t y a n d p o l i t i c a l m o t i v a t i o n o v e r r i d e a n a r g u m e n t a t i o n b a s e d o n l o g i c a l r e a s o n s t o j u s t i fy a s t a t e m e n t , i n t hi s c a s e why C a p t a i n D r e y fu s s ho u l d b e fr e e . C u l t u r a l v a l u e g i v e n t o t he a u t he n t i c i t y o f s e l f e x t e n d s g r a d u a l l y t o t he v a r i o u s fi e l d s o f s o c i a l l i fe u n t i l i n fl u e n c i n g t he p r o d u c t i o n o f s c i e n t i fi c d i s c o u r s e o n t he s o c i a l wo r l d . T he u s e o f “ I ” i n s o c i a l s c i e n c e s i n he r i t s t hi s c u l t u r a l q u e s t fo r a u t he n t i c i t y t ha t p l a c e s s u b j e c t s a n d t he i r i n v o l v e m e n t i n t he he a r t o f t he r e s e a r c h p r o c e s s .

O n t he o t he r ha n d , t he d e v e l o p m e n t o f s o c i a l s c i e n c e s ha s l e a d t o c a l l i n g i n t o q u e s t i o n t he i d e a o f o b j e c t i v i t y o f s c i e n t i fi c r e s e a r c h c o r r e s p o n d i n g t o a r a d i c a l s e p a r a t i o n b e t we e n r e s e a r c he r s a n d t he i r o b j e c t . T hi s c ha l l e n g e fi t s i n wha t B e c k ( 1 9 9 2 ) a n a l y s e s a s t he d e v e l o p m e n t o f a p e r s o n a l r e fl e x i v i t y whe r e b y m e m b e r s o f m a t u r e m o d e r n s o c i e t i e s q u e s t i o n e s t a b l i s he d p a t t e r n o f l i fe a n d s o c i a l m o r e s . I t a l s o a p p l i e s t o s c i e n t i fi c k n o wl e d g e a n d i t s c l a i m s t o o b j e c t i v i t y . S o c i a l s c i e n c e s ha v e s ho wn t ha t s c i e n t i fi c k n o wl e d g e p r o c e e d s fr o m s o c i a l a n d hi s t o r i c a l c o n t e x t s i n whi c h t he y a r e fo r m e d . U n d e r t he i n fl u e n c e o f s o c i a l a n d c u l t u r a l a n t hr o p o l o g y a n t hr o p o l o g y , i n whi c h r e l a t i o n s hi p t o o t he r s i s c e n t r a l i n t he r e s e a r c h p r o c e s s , t hi s r e l a t i v i s m t e n d s t o p e n e t r a t e s o c i o l o g y , e v e n i f t he s c i e n t i fi c p r a c t i c e r e m a i n s s t r o n g l y m a r k e d b y o b j e c t i v i s m . T he u s e o f “ I ” i n t e x t s e x p r e s s e s a n a d a p t a t i o n t o r e fl e x i v i t y ,

e i t he r a s a c o m p r o m i s e wi t h o b j e c t i v i t y o r a s a n e w e p i s t e m o l o g i c a l s t a n d .

The different uses of the first person in sociological texts

T he t wo c u l t u r a l d i m e n s i o n s o f a u t he n t i c i t y a n d r e fl e x i v i t y d e l i n e a t e a s p a c e i n whi c h i t i s p o s s i b l e t o l o c a t e a n d t o d i ffe r e n t i a t e t e x t s u s i n g t he fi r s t p e r s o n . I n a r e m a r k a b l e p a p e r , O l i v i e r d e S a r d a n ( 2 0 0 0 ) p r o p o s e s t o d i s t i n g u i s h fo u r r e c o u r s e s t o “ I ” i n wr i t i n g fr o m t he p o i n t o f v i e w o f t he s c i e n t i fi c p r o c e s s .

F i r s t l y , “ I ” r e p l a c e s t he t r a d i t i o n a l “ u s ” : i t a d a p t s t he t e x t t o a c o n t e m p o r a r y c u l t u r a l s e n s i b i l i t y fo r l e s s g r a n d i l o q u e n c e a n d fo r a p p a r e n t g r e a t e r s i m p l i c i t y .

T he u s e o f t he fi r s t p e r s o n c a n a l s o p r o c e e d fr o m a n a l t e r n a t i v e e p i s t e m o l o g y t o p o s i t i v i s m i n c l a i m i n g fo r a n i n t e r s u b j e c t i v e s t a n d . T hi s l e a d s t o hi g hl i g ht t he i m p l i c a t i o n o f r e s e a r c he r s i n t he r e s e a r c h p r o c e s s a n d t o c l a r i fy t he e ffe c t o f t he i r p r e s e n c e a n d i n t e r p r e t a t i o n o n t he p r o d u c t i o n o f k n o wl e d g e . T o a c e r t a i n d e g r e e , t he p r o d u c t i o n o f e m p i r i c a l d a t a i s b l u r r e d b y t he a c c o u n t o f t he a c t i v i t y o f r e s e a r c he r s .

A t hi r d u s e o f “ I ” c a n p r o c e e d fr o m m o r a l o r p o l i t i c a l c o n c e r n s s e e k i n g t o p r e s e n t t he s u b j e c t s o f i n v e s t i g a t i o n a s p e o p l e a n d n o t a s r e s e a r c h o b j e c t s . Whe n s a y i n g “ I ” , r e s e a r c he r s i n v o l v e t he m s e l v e s a s p e r s o n s

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a n d a l l o w t ho s e u n d e r s t u d y t o e x i s t i n a s y m m e t r i c a l wa y .

T he l a s t r e c o u r s e d i s t i n g u i s he d b y O l i v i e r d e S a r d a n l o c a t e s t he u s e o f “ I ” i n t he p e r s p e c t i v e o f v a l i d a t i o n o f fi e l d wo r k . I t i s n o w r e c o g n i z e d t ha t t he i m p l i c a t i o n o f r e s e a r c he r s p l a y s a g r e a t r o l e i n t he p r o d u c t i o n o f d a t a , whi c h a r e t he m a t e r i a l fr o m whi c h t he y b u i l d t he i r a n a l y s i s . A s n o t i c e d b y D e v e r e u x ( 1 9 6 7 ) , “ the analy sts of behav iour m ust learn to adm it that they nev er observ e the behav iour that “ would hav e taken place in their absence” and they do not hear the sam e narrativ e that the narrator would hav e giv en to other analy sts ” . T he u s e o f “ I ” s e e k s t o t a c k l e t he p r o b l e m p o s e d b y t he s u b j e c t i v i t y o f r e s e a r c he r s i n c o l l e c t i n g i n fo r m a t i o n , a n d t he r e fo r e t he v a l i d i t y o f t he m a t e r i a l fo r a n a l y s i s .

T hu s , t he u s e o f t he fi r s t p e r s o n i n a t e x t c a n e x p r e s s d i ffe r e n t p o s i t i o n s a s r e g a r d s r e s e a r c h. T he y g o fr o m t he a d a p t a t i o n o f s t y l e wi t ho u t c ha l l e n g i n g a s c i e n t i fi c a p p r o a c h t ha t r e s t s o n t he d i s t i n c t i o n b e t we e n t he o b s e r v e r a n d t he o b s e r v e e , t o t he r a d i c a l a s s e r t i o n o f a r e l a t i v i s t i c e p i s t e m o l o g y i n r u p t u r e wi t h t he e s t a b l i s he d s c i e n t i fi c p r a c t i c e s . I n a d d i t i o n t o t he r u l e s a n d p r i n c i p l e s r e l a t i n g t o t he v a l i d a t i o n o f k n o wl e d g e , t he u s e o f “ I ” i n v e s t s p e r s o n a l a u t he n t i c i t y a s a fr a m e o f r e fe r e n c e i n r e s e a r c h. I t c a n t hu s r e i n fo r c e t he s c i e n t i fi c a r g u m e n t a t i o n i n d i s p l a y i n g t he a c t i v e r o l e o f r e s e a r c he r s , a s i t c a n c o n c e a l s ho r t c o m i n g s i n t he c o n s t i t u t i o n o f d a t a a n d i n t he a n a l y s i s . I n r e fe r r i n g t o t he p e r s o n a l

e x p e r i e n c e o f t he i n d i v i d u a l , i t a d d r e s s e s t he i s s u e o f c o n t r o l a n d v a l i d a t i o n o f t he a n a l y s i s i n t he s c i e n t i fi c c o m m u n i t y .

R esearch between inv olv em ent and detachm ent

I n s o c i a l s c i e n c e s , t he p e r s o n a l e x p e r i e n c e o f r e s e a r c he r s i s c a l l e d u p o n d i r e c t l y i n fi e l d wo r k o r i n d i r e c t l y i n s e c o n d a r y a n a l y s i s . I n a c u l t u r a l c o n t e x t o f c l a i m s fo r a u t he n t i c i t y , i t i s n o t p o s s i b l e t o e s c a p e q u e s t i o n i n g t hi s e x p e r i e n c e b y c o n s i d e r i n g t ha t i t i s s t r i c t l y p e r s o n a l a n d s u b j e c t i v e , a n d n o t a c c e s s i b l e t o d i s c u s s i o n wi t h p r o fe s s i o n a l p e e r s .

I t i s p o s s i b l e t o t a c k l e t hi s q u e s t i o n i n t e r m s o f i n v o l v e m e n t a n d d e t a c hm e n t o f t he r e s e a r c he r i n s c i e n t i fi c a c t i v i t y , a s o n c e fo r m u l a t e d b y E l i a s ( 1 9 5 6 ) . I n v o l v e m e n t i s d e fi n e d a s a s i t u a t i o n i n whi c h s c i e n t i s t s s a y m o r e o n t he m s e l v e s o r o n t he i r g r o u p t ha n o n t ho s e t ha t t he y s t u d y whe r e a s , i n d e t a c hm e n t , t he y s p e a k m o r e o f t he o t he r s , e v e n i f t he y c o n t i n u e t o s a y s o m e t hi n g o n t he m s e l v e s . T he s e t wo t e n d e n c i e s c r o s s a n y r e s e a r c h i n hu m a n a n d s o c i a l s c i e n c e s . Whe n t he c o n s t r u c t i o n o f d a t a d e p e n d s o n hu m a n r e l a t i o n s hi p s , t he i m p l i c a t i o n o f t he r e s e a r c he r a s m e m b e r o f a s o c i a l g r o u p i s i n e v i t a b l y p r e s e n t . “ S ocial scientists are liable to be caught in a dilem m a. They work and liv e in a world in which alm ost ev ery where groups, sm all and great, including their own groups, are engaged in a struggle for position and often enough for

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surv iv al [ … ] Their experience of them selv es as upholders of a particular social and political creed which is threatened, can hardly fail to hav e an em otional undertone. ” T hi s e m o t i o n a l l o a d i s l i k e l y t o n e u t r a l i z e t he i n t e l l e c t u a l u n d e r s t a n d i n g a n d t o p r e v e n t t he d e t a c hm e n t n e c e s s a r y t o s c i e n t i fi c a n a l y s i s . F o r hi m “ the problem confronting those who study one or the other aspects of hum an groups is how to keep their two role as participant [ in the social and political affairs of the groups they belong to] and as inq uirer clearly and consistently apart, and as a professional group, to establish in their work the undisputed dom inance of the latter.” T he a t t e n t i o n p a i d b y r e s e a r c he r s t o t he c o n s t r u c t i o n o f t he o b j e c t a n d t o t he m e t ho d s d o e s n o t r e m o v e t hi s d i ffi c u l t y e v e n i f i t o ffe r s m a r k s t o a v o i d t he e n c r o a c hm e n t o f t he i r o wn s o c i a l p a r t i c i p a t i o n u p o n t he i r wo r k .

I n t hi s p e r s p e c t i v e , t he i s s u e o f s c i e n t i fi c v a l i d i t y o f s o c i a l s t u d i e s c a n b e r e fe r r e d o n t he o n e ha n d t o t he c o n t r o l o f t he e m o t i o n a l i m p l i c a t i o n o f r e s e a r c he r s t o wa r d s t he g r o u p s t he y s t u d y a n d , o n t he o t he r ha n d , t o t he c a p a c i t y o f o b j e c t i fy i n g t he e ffe c t o f t hi s i m p l i c a t i o n o n t he p r o d u c t i o n a n d t he i n t e r p r e t a t i o n o f t he d a t a . T he a n s we r c a n n o t b e fo u n d i n r a d i c a l d i s t a n c e , b e c a u s e i t r e m o v e s e m p a t hy t o t ho s e u n d e r s t u d y n e c e s s a r y t o ha v e a c c e s s t o t he i r e x p e r i e n c e a n d t o u n d e r s t a n d i t . I t c a n n o t e i t he r b e fo u n d i n a t o t a l i m p l i c a t i o n , b e c a u s e t hi s l i m i t s t he p o s s i b i l i t y o f g o i n g b e y o n d t he r e l a t i o n s hi p s e s t a b l i s he d b y r e s e a r c he r s wi t h t he i n d i v i d u a l s t he y s t u d y . I t ha s t o b e fo u n d i n t he b a l a n c e r e s e a r c he r s m a n a g e t o s e t u p

b e t we e n i n v o l v e m e n t a n d d e t a c hm e n t t o p r o d u c e k n o wl e d g e o n t he s o c i a l wo r l d , whi c h r e m a i n s t he m i s s i o n fo r whi c h t he y ha v e r e c e i v e d a p r o fe s s i o n a l m a n d a t e .

R e s e a r c h m e t ho d s a n d r e s u l t s m u s t b e c a p a b l e o f e x p r e s s i n g t hi s b a l a n c e a s a n e p i s t e m o l o g i c a l s t a n d . F i r s t p e r s o n s t e x t s a r e e x p e c t e d t o e x p l a i n t he b a l a n c e a d o p t e d b y r e s e a r c he r s , a n d t he c o n t r o l t he y ha v e o n t he e m o t i o n a l l o a d i n v o l v e d i n r e s e a r c h. T hi s e x p e c t a t i o n i s p a r t i c u l a r l y i m p o r t a n t i n s t u d y i n g t he s o c i a l a n d c u l t u r a l b a r r i e r s b e t we e n n o r m a l i t y a n d i n t e l l e c t u a l d i s a b i l i t y . I n q u e s t i o n i n g t he fr o n t i e r s i n whi c h n o r m a l i t y i s d e fi n e d , t he r e i s i n e v i t a b l y a t e n s i o n b e t we e n t he d e fe n c e o f t he n o r m a l wo r l d t o whi c h t he y b e l o n g a n d t he a x i o l o g i c a l n e u t r a l i t y e x p e c t e d i n r e s e a r c h.

R esearc h as ac c ess to voic e

Wha t m a k e s a s o c i a l g r o u p m u t e d i s t ha t c l a i m s o f i t s m e m b e r s t o p a r t i c i p a t e i n t o s o c i a l l i fe a r e d i s c o u n t e d a n d t ha t t he y ha v e i n t e r n a l i s e d t he i d e a t ha t t he y a r e n o t e n t i t l e d t o r a i s e t he i r v o i c e . T he y ha v e n o fo r u m i n whi c h t he y c a n c o m p l a i n a g a i n s t t he i n fr i n g e m e n t o f o t he r s . I n q u a l i t a t i v e r e s e a r c h, i n t e r v i e ws a r e s o c i a l s i t u a t i o n s i n whi c h m u t e d p e o p l e c a n b e he a r d p r o v i d e d t ha t r e s e a r c he r s d o n o t r e p r o d u c e t he

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c o n fi g u r a t i o n o f m u t e d n e s s a n d c o n s i d e r wha t p e o p l e s a y s e r i o u s l y .

I ntellectual disability as a lim inal condition

T he q u a l i fi c a t i o n o f p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s a s a m u t e d g r o u p r e fe r s t o t he a n a l y s i s o f d i s a b i l i t y a s a l i m i n a l s i t u a t i o n ( C a l v e z , 1 9 9 4 , 2 0 0 0 ) . T he c o n c e p t o f l i m i n a l i t y ha s i t s o r i g i n i n t he a n a l y s i s o f t he r i t e s o f p a s s a g e b y V a n G e n n e p ( 1 9 0 9 / 1 9 6 0 ) . I t q u a l i fi e s t he m o m e n t whe n i n d i v i d u a l ha v e l o s t a fi r s t s t a t u s a n d ha v e n o t r e a c he d a s e c o n d s t a t u s y e t ; t he y a r e i n a n i n -b e t we e n s i t u a t i o n a n d fl o a t b e t we e n t wo s t a t u s e s . S p e c i fi c a t t i t u d e s o f fe a r a n d d i s t r u s t a n d r e s p o n s e s o f e x t e r n a l s o c i a l c o n t r o l a r e o p p o s e d t o t hi s t hr e s ho l d s i t u a t i o n a n d i n d i v i d u a l s e x p e r i e n c i n g i t i n o r d e r t o p r o t e c t t he e s t a b l i s he d s o c i a l a n d s y m b o l i c o r d e r .

T he a n a l y s i s o f d i s a b i l i t y a s l i m i n a l i t y hi g hl i g ht s t hi s s i t u a t i o n o f t hr e s ho l d a s a c e n t r a l c o n fi g u r a t i o n i n t he l i fe o f d i s a b l e d p e o p l e . T hi s c o n c e p t wa s u s e d b y M u r p hy ( 1 9 8 7 , 1 9 8 8 ) t o c ha r a c t e r i z e t he c o n d i t i o n e x p e r i e n c e d b y i n v a l i d s i n t he A m e r i c a n s o c i e t y . H e n o t e d t ha t “ [ t he d i s a b l e d ] exist in partial isolation from society as undefined, am biguous people. This undefined q uality , an existential departure from norm ality , contributes to the widespread av ersion to the disabled reported by researchers.” ( M u r p hy , 1 9 8 7 )

I ha v e d e v e l o p e d a s i m i l a r a p p r o a c h t o a n a l y s e t he c o n d i t i o n o f i n t e l l e c t u a l l y d i s a b l e d p e r s o n s l i v i n g i n t he o r d i n a r y s o c i e t y , s t r e s s i n g t he i m p o r t a n c e o f s o c i a l a n d c u l t u r a l c o n t e x t s i n t he p r o d u c t i o n o f s u c h c o n fi g u r a t i o n s ( C a l v e z , 1 9 9 1 , 1 9 9 3 ) . I n s t u d y i n g r e l a t i o n s hi p s o f d a i l y l i fe i n whi c h p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s we r e i n v o l v e d i n a l o c a l c o m m u n i t y , I ha v e o b s e r v e d a s c o p e o f r e s p o n s e s o f o r d i n a r y p e o p l e v a r y i n g fr o m fe e l i n g s o f r e p u l s i o n , fe a r a n d e v e n ho s t i l i t y t o e m p a t hy ( C a l v e z , 1 9 9 1 , 1 9 9 3 ) . A m b i v a l e n t a t t i t u d e s , m a d e o f c o m p a s s i o n a n d r e j e c t i o n , r e s u l t e d i n a n a s y m m e t r y o f r e l a t i o n s a n d l e a d t o t he a l l o c a t i o n o f a m i n o r s t a t u s . P o t e n t i a l d a n g e r s , i n p a r t i c u l a r s e x u a l d a n g e r s , a s s o c i a t e d wi t h t he i r i n t e l l e c t u a l d i s a b i l i t y we r e u s e d t o j u s t i fy t he a l l o c a t i o n o f a s p e c i fi c s t a t u s a n d t he d e n i a l o f a c c e s s t o l o c a l v o i c e . T he s e p r e s s u r e s c o n fl i c t e d wi t h t he fa c t t ha t p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s l i v e d i n t he s a m e n e i g hb o u r ho o d s a s p e o p l e d e m a n d i n g t he i r c o n t r o l . T he t e n s i o n b e t we e n r e j e c t i o n a n d a c c e p t a n c e r e s u l t e d i n a n i n -b e t we e n s o c i a l a n d c u l t u r a l c o n fi g u r a t i o n t ha t t he c o n c e p t o f l i m i n a l i t y a t t e m p t s t o a c c o u n t fo r .

The m utedness of the intellectually disabled

S p e a k i n g o f m u t e d n e s s a s a c o n s e q u e n c e o f t hi s l i m i n a l c o n d i t i o n m e a n s m e a n t ha t p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s d o n o t a c c e s s t o v o i c e i n o r d i n a r y c o n d i t i o n s a n d t ha t , t o b e he a r d , t he y m u s t e n d o w t he s t a t u s

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o f i n t e l l e c t u a l l y d i s a b l e d a s s i g n e d t o t he m a n d m a k e s p e c i fi c c l a i m s c o m p a t i b l e wi t h t hi s s t a t u s . T hi s c o n fl i c t s wi t h p r e t e n s i o n s t o n o r m a l i t y t ha t a r e c o n s t i t u e n t o f t he fa c t t ha t t he y l i v e i n t he c o m m o n wo r l d l i k e o r d i n a r y p e o p l e .

I f m u t e d n e s s c a n c ha r a c t e r i s e t he s i t u a t i o n o f d i ffe r e n t o p p r e s s e d g r o u p s , t he r e a r e s o m e s p e c i fi c i t i e s i n r e l a t i o n t o i n t e l l e c t u a l l y d i s a b i l i t i e s . I n a s o c i o l o g i c a l p e r s p e c t i v e , t he s e s p e c i fi c i t i e s p r o c e e d fr o m t he c a r e e r s o f p e r s o n s wi t h i n t e l l e c t u a l d i s a b i l i t i e s a n d fr o m t he i r c o n d i t i o n s o f s o c i a l i z a t i o n . T o c o n s i d e r t he m , a t t e n t i o n ha s t o b e g i v e n t o t he p o s s i b i l i t i e s t he y ha d t o c o n s t i t u t e a r e p e r t o r y o f wo r d s , a t t i t u d e s a n d a s s o c i a t e d c u l t u r a l m e a n i n g s , a n d o p p o r t u n i t i e s t o m o b i l i z e t hi s r e p e r t o r y i n t he e v e r y d a y l i fe , t o v a l i d a t e a n d t o e n r i c h i t . I f t he s e s p e c i fi c i t i e s d e p e n d o n t he p o t e n t i a l i t i e s o f i n d i v i d u a l s t he m s e l v e s , t he y ha v e a l s o i m p o r t a n t s o c i a l a n d c u l t u r a l d i m e n s i o n s t hr o u g h whi c h t he s e p o t e n t i a l i t i e s a r e t r a n s fo r m e d i n t o s o c i a l a n d c u l t u r a l i n c o m p e t e n c e .

C o m m o n s e n s e r e l a t e s t he s e d i ffe r e n c e s t o a s u p p o s e d n a t u r e o f i n d i v i d u a l s a n d fi n d s t he e v i d e n c e o f t he i r d i s a b i l i t i e s i n t he i r l a c k o f s e l f-c o n t r o l a n d a c c o u n t a b i l i t y a n d i n t he i r d i ffi c u l t i e s t o c o m m u n i c a t e a c c o r d i n g t o t he i m p l i c i t r u l e s o f c o m m u n i c a t i o n . Wha t p e o p l e wi t h i n t e l l e c t u a l l y d i s a b i l i t i e s s a y i s a u t o m a t i c a l l y d i s m i s s e d i n s o fa r a s t he y d o n o t m a n a g e t o g i v e t he m fo r m s a n d c o n t e n t s a c c e p t a b l e b y o r d i n a r y p e o p l e . T hi s r e j e c t i o n e x p r e s s e s t he s u p e r i o r i t y o r d i n a r y p e o p l e c l a i m t o ha v e o v e r t ho s e who d o n o t

c o n t r o l t he s o c i a l a n d c u l t u r a l c o d e s t he y u s e ( E l i a s a n d S c o t s o n , 1 9 9 4 ) . I t t a k e s p a r t i n t he s t r u c t u r e s o f s o c i a l p o we r a n d s y m b o l i c d o m i n a t i o n , d e n y i n g p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s t he p o s s i b i l i t y t o b e he a r d wi t h t he i r o wn c u l t u r a l r e s o u r c e s .

I f r e s e a r c h d o e s n o t g r a n t fu l l c o n s i d e r a t i o n t o t he s p e e c h o f p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s a s i t i s a n d wi t h wha t i t c o n v e y s , i t t e n d s t o r e p r o d u c e t he s a m e s t r u c t u r e s o f p o we r a n d d o m i n a t i o n .

A ccess to v oice in research situations

L i k e i n e v e r y o t he r s t u d y , wha t p e o p l e s a y ha s t o b e t a k e n s e r i o u s l y b y r e s e a r c he r s b e c a u s e t he y c o n v e y m e a n i n g s r e l a t e d t o t he i r e x p e r i e n c e i n u s i n g a m o d e o f c o m m u n i c a t i o n t he y ha v e m a n a g e d t o d o m e s t i c a t e a n d a r e p e r t o i r e o f wo r d s a n d m e a n i n g s t he y ha v e c o n s t r u c t e d i n t he d i ffe r e n t c i r c u m s t a n c e s o f t he i r l i fe . T he d i ffi c u l t i e s m e t b y r e s e a r c he r s t o m a k e i n t e r v i e ws wi t h p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s , t o u n d e r s t a n d t he i r s p e e c he s a n d t o i n t e r p r e t t he i r c o n t e n t s p u t t he m e x p l i c i t l y i n fr o n t o f p r o b l e m s o f c o m m u n i c a t i o n a n d d i ffi c u l t i e s o f s u s t a i n e d i n t e r a c t i o n s m e t b y o r d i n a r y p e o p l e whe n i n t e r a c t i n g wi t h p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s . T he y e x p r e s s d i s c r e p a n c i e s i n t he a c c e s s t o a c o m m o n c u l t u r a l r e p e r t o i r e a n d i n t he u s e o f c u l t u r a l u n i t s t o c o m m u n i c a t e a n d t o a c t wi t h o t he r s . T he y a r e a l s o i n t e r e s t i n g i n p r e s e n t i n g r e s e a r c he r s wi t h p r o b l e m s c l o s e t o t ho s e m e t b y o r d i n a r y p e o p l e , i .e . i n

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e x p e r i e n c i n g o n e s i d e o f t he i n t e r a c t i o n s t a k i n g p l a c e b e t we e n o r d i n a r y p e o p l e a n d p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s .

H o we v e r , a m a j o r d i ffe r e n c e wi t h e v e r y d a y l i fe s i t u a t i o n s i s t ha t r e s e a r c he r s a r e n o t s u p p o s e d t o p a r t i c i p a t e i n s u c h i n t e r a c t i o n s i n d e fe n d i n g p r i n c i p l e s a n d c a t e g o r i e s s u s t a i n i n g t he o r d i n a r y wo r l d , a s o r d i n a r y p e o p l e wo u l d d o . O n t he c o n t r a r y , t he y a r e e x p e c t e d t o i n t e r a c t i n o r d e r t o u n d e r s t a n d t he s o c i a l a n d c u l t u r a l c o n t e x t fr o m t he p o i n t o f v i e w o f t he i n t e l l e c t u a l l y d i s a b l e d t he m s e l v e s . T hi s e x p e c t a t i o n r e q u i r e s r e s e a r c he r s t o q u e s t i o n t he c u l t u r a l p r e v e n t i o n s t he o r d i n a r y wo r l d t o whi c h t he y b e l o n g d e v e l o p s o n i n t e l l e c t u a l d i s a b i l i t y . T hi s s p e c i fi c c o n fi g u r a t i o n wi t h i t s e m o t i o n a l u n d e r t o n e i s a c o m p o n e n t o f t he e n t i r e r e s e a r c h p r o c e s s a n d ha s t o b e i n v e s t i g a t e d fo r i t a d d r e s s e s t he c r u c i a l i s s u e o f s e p a r a t i o n a s a r e s p o n s e t o i n t e l l e c t u a l d i s a b i l i t y . R e s e a r c he r s ha v e c o n t i n u o u s l y t o o b j e c t i fy t he i r o wn p e r c e p t i o n s a n d i n t e r p r e t a t i o n s r e l a t e d t o t he d e fe n c e o f t he s o c i a l o r d e r t o whi c h t he y b e l o n g .

F i r s t p e r s o n t e x t s wr i t t e n b y r e s e a r c he r s a r e o f g r e a t i n t e r e s t i n d i s c u s s i n g t he c o n d i t i o n s o f t he i r p a r t i c i p a t i o n i n t he s e i n t e r a c t i o n s a n d i n d e s c r i b i n g t he c o n t e x t i n whi c h p r o b l e m s o f c o m m u n i c a t i o n , s i t u a t i o n s o f d o m i n a t i o n , c u l t u r a l p r e v e n t i o n s a r e m e t . T he i m p l i c a t i o n o f r e s e a r c he r s i n t he i r t e x t s i s t he r e fo r e p r o n e t o l e a d t o a n a n a l y s i s o f t he s o c i a l a n d c u l t u r a l e x p e r i e n c e o f d i s a b i l i t y .

P ersonal ac c ou nts in researc h proc ess

S o c i a l s c i e n t i s t s o ft e n s o l v e p r o b l e m s o f i n t e r p r e t a t i o n o f i n fo r m a t i o n i n r e l a t i n g t he m t o t he i r o wn i n n e r l i fe wi t ho u t a l wa y s b e i n g c o n s c i o u s o f t he s e c o n n e c t i o n s b e t we e n p e r s o n a l e x p e r i e n c e a n d r e s e a r c h c o n c e r n s . E ffo r t s t o a c c o u n t fo r c o n d i t i o n s o f i n t e r p r e t a t i o n a r e i n t e r e s t i n g fo r r e s e a r c h i n s o fa r a s t he y c o n t r i b u t e t o u n v e i l t he p e r s o n a l i m p l i c a t i o n a n d c ho i c e s o f r e s e a r c he r s . A d i s t i n c t i o n n e e d s t o b e m a d e b e t we e n a c c o u n t s o f a u t he n t i c i t y t e n d i n g t o e x p l a i n a n d j u s t i fy t he p e r s o n a l i n v o l v e m e n t o f r e s e a r c he r s i n t he i r t he o r e t i c a l c ho i c e s , a n d a c c o u n t s o f r e fl e x i v i t y d i s c u s s i n g t he c o n d i t i o n s o f c o l l e c t i o n a n d i n t e r p r e t a t i o n o f d a t a . I wi l l t a k e t wo e x a m p l e s r e l a t e d t o t he s t u d y I m e n t i o n e d a b o v e t o i l l u s t r a t e t he s e t wo t y p e s o f a c c o u n t s . T he fi r s t r e fe r s t o t he t he o r e t i c a l c ho i c e s g u i d i n g m y a p p r o a c h; t he s e c o n d e x p l a i n s t he d e v e l o p m e n t o f t he c o n c e p t o f l i m i n a l i t y . I wi l l p r e s e n t t he i r c o r r e s p o n d e n c e wi t h m y p e r s o n a l e x p e r i e n c e a n d d i s c u s s t he i n t e r e s t o f t he s e p e r s o n a l a c c o u n t s r e g a r d i n g t he p r o d u c t i o n o f k n o wl e d g e .

M y interest for cultural theory

A t he o r e t i c a l c ho i c e i s n o t o n l y m a d e fo r s c i e n t i fi c g o o d r e a s o n s ( i .e . t he p a r a d i g m s a n d t he i r e x p l a n a t o r y c a p a c i t i e s ) , b u t a l s o b e c a u s e i t e c ho e s s o m e p e r s o n a l e x p e r i e n c e o f t he r e s e a r c he r . T he e x p e r i e n c e t o whi c h I

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wo u l d l i k e t o r e fe r t a k e s p l a c e i n t he s i x t i e s i n m y n a t i v e v i l l a g e , l o c a t e d i n t he We s t e r n p a r t o f B r i t t a n y . I t wa s a r u r a l c a t ho l i c v i l l a g e , wi t h a s t r o n g s e n s e o f t he c o m m u n i t y a n d p r e s c r i b e d r o l e s . T hi s o r g a n i s a t i o n wa s c ha l l e n g e d b y m o d e r n i s a t i o n t r e n d s . H o we v e r , t he c o m m u n i t y wa s s t i l l c ha r a c t e r i z e d b y c u l t u r a l ho m o g e n e i t y . Whe n I wa s i n p r i m a r y s c ho o l , t he r e we r e t hr e e c hi l d r e n a b i t o l d e r t ha n m e t ha t we r e “ r e t a r d e d ” i n t he l o c a l p a r l a n c e . O n e wa s t he s o n o f t he g a r a g e m e c ha n i c . I t wa s s a i d t ha t t he fa m i l y ha d n o c ha n c e b e c a u s e g i r l s we r e b o r n n o r m a l whe r e a s , fo r o b s c u r e r e a s o n s o f he r e d i t y , b o y s we r e b o r n a b n o r m a l . T he b o y wa s l i v i n g i n hi s fa m i l y . F o r t he o t he r c hi l d r e n , he wa s a s i m p l e -m i n d e d ha r m l e s s b i g b o y who c o u l d n o t s p e a k p r o p e r l y , a n i n fa n t i n a hu g e b o d y t ha t wa s m e t fr o m t i m e t o t i m e . T he s e c o n d b o y wa s t he s o n o f a b l a c k s m i t h l i v i n g i n a r e m o t e p a r t o f t he v i l l a g e . T he fa t he r ha d a r e p u t a t i o n t o b e a m a r g i n a l m a n who d i d n o t t a k e p a r t i n t he s o c i a l l i fe o f t he c o m m u n i t y . N o r e a s o n wa s k n o wn fo r t he r e t a r d a t i o n o f hi s c hi l d . A c c o r d i n g t o t he he a r s a y , t he b o y s p e n t hi s d a y s a n d n i g ht s s e c l u d e d i n a l o c k e d c a g e . F r o m t i m e t o t i m e , he m a n a g e d t o e s c a p e a n d we n t r u n n i n g i n t he c o u n t r y s i d e , t e r r i fy i n g o t he r c hi l d r e n i n c l u d i n g m e . T he r e wa s a n o t he r b o y who wa s a t s c ho o l wi t h u s . H i s p a r e n t s we r e d i v o r c e d a n d he wa s l i v i n g wi t h hi s g r a n d m o t he r i n t he n e x t v i l l a g e . T he c hi l d r e n r u m o u r s a i d t ha t s he wa s v e r y s e v e r e wi t h hi m a n d b e a t hi m r e g u l a r l y . H e fa i l e d a t s c ho o l a n d we t o o k hi m fo r s t u p i d . C o n s t a n t l y s u b j e c t t o o u r b u l l y i n g , hi s o n l y r e s p o n s e wa s b o x i n g hi s s c ho o l m a t e s .

A d i s t a n t r e fl e c t i o n o n t he s e s i t u a t i o n s , n o u r i s he d b y a s o c i o l o g i c a l e x p e r i e n c e , g u i d e d s o m e c e n t r a l q u e s t i o n s i n d e v e l o p i n g r e s e a r c h o n i n t e l l e c t u a l d i s a b i l i t y . F o r m e , i n t e l l e c t u a l d i s a b i l i t y ha d t o b e c o n s i d e r e d wi t h r e fe r e n c e t o a c o m m u n i t y p r o v i d i n g p r i n c i p l e s a n d j u s t i fi c a t i o n s t o i n t e r p r e t s i t u a t i o n s a n d t o g u i d e a t t i t u d e s a n d r e l a t i o n s hi p s . R e g a r d i n g t he s e r e t a r d e d b o y s , a s i t wa s s a i d , b e n e v o l e n c e wa s s ho we d t o t he fa m i l y i n t e g r a t e d i n t o t he c o m m u n i t y , whe r e a s fe a r a n d r e j e c t i o n r e s p o n d e d t o p o s i t i o n s a t t he fr o n t i e r a n d t o l o s s o f c o m m u n i t y m e m b e r s hi p . A t a fi r s t l e v e l , t he d i ffe r e n c e b e t we e n t he t hr e e c hi l d r e n a n d u s c o u l d b e d e s c r i b e d i n s i m p l e d i c ho t o m i e s : k i n d v s . d a n g e r o u s , d o m e s t i c a t e d v s . wi l d o r s a v a g e . I t r e fe r r e d t o a d e fi n i t i o n o f t he c o m m u n i t y i n t e r m s o f p a c i fi c a t i o n a n d d o m e s t i c a t i o n , whi c h p r o v i d e s p r i n c i p l e s fo r c l a s s i fy i n g d i ffe r e n c e s a n d fo r m a n u fa c t u r i n g s p e c i fi c r o l e s . H o we v e r , i f t he t hr e e b o y s ha d t he r e p u t a t i o n t o b e r e t a r d e d , p e r c e p t i o n s v a r i e d fr o m o n e t o a n o t he r .

M a r y D o u g l a s , wi t h who m I s t a r t e d t o wo r k a t t ha t t i m e , d i r e c t e d m y a t t e n t i o n t o t he v a r i a b i l i t y o f r e s p o n s e s t o i n t e l l e c t u a l d i s a b i l i t y , a n d s u g g e s t e d t o r e l a t e i t n o t o n l y t o t he s o c i a l o r d e r o f a c o m m u n i t y b u t a l s o t o t he d i ffe r e n t wa y s o f c o n s t r u c t i n g t he s o c i a l o r d e r i n t he c a s e o f c u l t u r a l he t e r o g e n e i t y . T hi s a p p r o a c h t o v a r i a b i l i t y i n r e l a t i o n t o s o c i a l o r d e r i s a k e y fe a t u r e o f he r c u l t u r a l t he o r y ( D o u g l a s , 1 9 7 8 , 1 9 8 6 ; T ho m p s o n , E l l i s , Wi l d a v s k y , 1 9 9 0 ) . I t he l p e d m e t o fo r m u l a t e a r e s e a r c h p e r s p e c t i v e o n s o c i a l i n t e g r a t i o n o f

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i n d i v i d u a l s wi t h i n t e l l e c t u a l d i s a b i l i t i e s . Whe r e a s a t t e n t i o n i s u s u a l l y g i v e n t o i n d i v i d u a l s ’ c o m p e t e n c e s t o fi n d t he i r o wn wa y i n a n o r d i n a r y wo r l d , c u l t u r a l t he o r y fo c u s e s o n t he p r i n c i p l e s o f a ffi l i a t i o n a n d o n t he o p p o r t u n i t i e s o ffe r e d t o i n d i v i d u a l s t o t a k e p a r t i n t he c o m m u n i t y . U s u a l l y t he s e p r i n c i p l e s a n d m o d e s o f a ffi l i a t i o n a r e i m p l i c i t a n d t a k e n fo r g r a n t e d . S i t u a t i o n s g e n e r a t e d b y p o l i c i e s o f m a i n s t r e a m i n g c ha l l e n g e o r d i n a r y a s s u m p t i o n s r e g a r d i n g t he t y p e o f i n d i v i d u a l s p r o n e t o b e m e t i n s p e c i a l i n s t i t u t i o n s a n d i n t he c o m m o n wo r l d . I n t he i n t e r a c t i o n s o f d a i l y l i fe wi t h p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s , o r d i n a r y p e o p l e ha v e t o p r o v i d e r e s p o n s e s t o t he s e s i t u a t i o n s a n d t o j u s t i fy t he m . I n d o i n g s o , t he y c a l l t o p r i n c i p l e s a b o u t hu m a n n a t u r e , i n d i v i d u a l ’ s a c c o u n t a b i l i t y t ha t a r e c o n s t i t u t i v e o f t he c u l t u r a l r e g i m e o f t he i r c o m m u n i t y a n d t ha t s u s t a i n t he i r s o c i a l i n s t i t u t i o n s . P e r c e p t i o n s o f i n t e l l e c t u a l d i s a b i l i t i e s c o m e o u t o f t hi s p r o c e s s a t a d o u b l e l e v e l o f c o g n i t i o n a n d j u s t i fi c a t i o n . A l l o c a t i o n o f a p l a c e a n d d e fi n i t i o n o f a r o l e i n r e l a t i o n t o t he c o m m u n i t y r e s p o n d t o t he p e r c e i v e d n a t u r e o f i n d i v i d u a l s . T he r e fo r e , d i s a b i l i t y i s c o n s i d e r e d a s t he r e s u l t o f i n t e r a c t i o n s b e t we e n i n d i v i d u a l s a n d c o m m u n i t i e s , r e g a r d i n g t he i r p o s s i b i l i t i e s t o fu l fi l t he r e q u i r e m e n t s o f i n s t i t u t i o n s s u s t a i n i n g t he c o m m u n i t y a t a fu n c t i o n a l a n d a t a s y m b o l i c l e v e l .

T hi s s ho r t a c c o u n t o f t he fo u n d a t i o n s o f a t he o r e t i c a l p e r s p e c t i v e he l p s t o u n d e r s t a n d t he s e l e c t i o n o f p r o b l e m s a n d t he c ho i c e o f a t he o r e t i c a l fr a m e wo r k . I f i t c a n ha v e a d i d a c t i c v i r t u e , i t d o e s n o t g i v e a n y

a d d i t i o n a l v a l i d a t i o n t o a p e r s p e c t i v e t ha t ha s t o b e d i s c u s s e d i n t he s c i e n t i fi c c o m m u n i t y a c c o r d i n g t o i t s p r o fe s s i o n a l r u l e s . I n m y o p i n i o n , a fi r s t p e r s o n c o m m u n i c a t i o n , r e l a t i n g t he c o n d i t i o n s i n whi c h a t he o r e t i c a l fr a m e wo r k i s a d o p t e d , ha s r e a l i n t e r e s t i n t e a c hi n g s i t u a t i o n s a s i t s u t i l i s a t i o n c a n g i v e t he s t r e n g t h a n d c o n v i c t i o n o f a p e r s o n a l e x p e r i e n c e t o a t he o r e t i c a l d i s c u s s i o n t ha t r e m a i n s o ft e n d i s t a n t . B e y o n d t hi s r he t o r i c a l s t r a t e g y , i t s i n t e r e s t i n r e s e a r c h t e x t s i s q u e s t i o n a b l e , e x c e p t i n g i v i n g t o u n d e r s t a n d t he p e r s p e c t i v e a d o p t e d .

The construction of lim inality as a social experience

T he c o n d i t i o n s i n whi c h t he c o n c e p t o f l i m i n a l i t y ha s b e e n u s e d t o q u a l i fy t he s o c i a l e x p e r i e n c e o f p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s a r e i l l u s t r a t i v e o f t he e n t a n g l e m e n t o f p e r s o n a l a n d t he o r e t i c a l fa c t o r s i n t he c o n s t r u c t i o n o f a n a n a l y s i s . T he a c c o u n t o f t he r e s e a r c h p r o c e s s ha s a n i n t e r e s t i n i d e n t i fy i n g t he e c ho o f t he p r e s e n c e o f t he r e s e a r c he r a n d i n r e n d e r i n g t he a p p r o a c h l i a b l e t o c r i t i c s r e g a r d i n g t he d i s t a n c e t o p r e -c o n c e i v e d i d e a s a n d e m o t i o n a l i m p l i c a t i o n .

Whe n I fi r s t ha d t o p r e p a r e a p r o p o s a l fo r a r e s e a r c h p r o g r a m o n “ L i fe s p a c e s a n d s o c i a l t r a j e c t o r i e s o f ha n d i c a p p e d o r

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m a l a d j u s t e d p e o p l e i n o r d i n a r y wo r l d ” 1 , I ha d n o p r e v i o u s r e s e a r c h e x p e r i e n c e i n t he fi e l d o f i n t e l l e c t u a l d i s a b i l i t i e s . R e c e n t l y a p p o i n t e d a s a r e s e a r c h o ffi c e r i n a s c ho o l o f s o c i a l wo r k , t hi s p r o g r a m wa s a fi r s t o p p o r t u n i t y o f wo r k . T he s t a r t i n g p o i n t o f m y p r o p o s a l wa s a s ho r t t e x t o f M a r y D o u g l a s , i n “ P urity and danger ” ( 1 9 6 6 ) r e fe r r i n g t o V a n G e n n e p ’ s a n a l y s i s o f t he r i t e s o f p a s s a g e i n t hr e e s t a g e s ( s e p a r a t i o n , l i m i n a l i t y , a g g r e g a t i o n ) t o a n a l y s e t he d i ffi c u l t i e s o f fo r m e r p r i s o n e r s o r i n -p a t i e n t s i n g a i n i n g fu l l r e c o g n i t i o n i n s o c i e t y . F o r he r , wi t ho u t r i t u a l s o f a g g r e g a t i o n , t he y s t a y e d m a r g i n a l o r i n a l i m i n a l s i t u a t i o n . T he r e s e a r c h p r o p o s a l fo r m u l a t e d t he r a t i o n a l e i n t e r m s o f a g g r e g a t i o n t o t he c o m m u n i t y o f i n d i v i d u a l s l i v i n g p r e v i o u s l y i n a s p e c i a l i n s t i t u t i o n fo r i n t e l l e c t u a l l y d i s a b l e d a n d wo r k i n g i n a s he l t e r e d wo r k s ho p .

I d e c i d e d t o m a k e t he s t u d y i n T r e g u i e r , a n hi s t o r i c a l a n d p r e v i o u s l y e p i s c o p a l c i t y wi t h a p o p u l a t i o n o f 2 , 8 0 0 i n ha b i t a n t s fo r t hr e e r e a s o n s . I t wa s o n e o f t he fi r s t e x p e r i e n c e s o f d e -i n s t i t u t i o n a l i s a t i o n o f a d u l t s wi t h i n t e l l e c t u a l d i s a b i l i t i e s i n F r a n c e , s t a r t i n g i n 1 9 7 6 . I t ha d a l o n g t r a d i t i o n o f c a r i n g fo r d e p r i v e d a n d « fe e b l e m i n d e d » , i n r e fe r e n c e t o t he l o c a l fi g u r e o f S a i n t Y v e s , i .e . a c u l t u r a l c o n c e r n fo r m a r g i n a l p o p u l a t i o n s . I n t he c o m m u n i t y , t he e x i s t e n c e o f d i ffe r e n t c o n t e x t s o f n e i g hb o u r ho o d a l l o we d

1 R e s e a r c h p r o g r a m m f u n d e d b y t h e C T N ER H I ( C e n t r e t e c h n i q u e n a t i o n a l d ’ é t u d e s e t d e r e c h e r c h e s s u r l e s h a n d i c a p s e t l e s i n a d a p t a t i o n s ) , P a r i s .

c o m p a r i s o n b e t we e n a t t i t u d e s t o i n d i v i d u a l s wi t h i n t e l l e c t u a l d i s a b i l i t i e s .

Whe n I c o m e b a c k t o m y fi e l d wo r k n o t e s , I c a n s e e t ha t i n i n t e r v i e wi n g m e m b e r s o f t he c o m m u n i t y i n o r d e r t o ha v e a k n o wl e d g e o f t he l o c a l c o n t e x t , I r a p i d l y p e r c e i v e d t ha t a s p e c i fi c d i s t a n c e e x i s t e d b e t we e n m e m b e r s o f t he c o m m u n i t y a n d p e o p l e wo r k i n g i n t he s he l t e r e d wo r k s ho p , a s t he y we r e k n o wn l o c a l l y . T hi s d i s t a n c e wa s i n n o wa y c o m p a r a b l e wi t h t he o r d i n a r y r e l a t i o n s hi p s wi t hi n t he c o m m u n i t y . I n a d d i t i o n , o r d i n a r y d e m a n d s t o t he s e p e o p l e we r e v e r y c o n t r a d i c t o r y a n d d i ffe r e n t fr o m a l o c a l n e i g hb o u r ho o d t o a n o t he r . F i r s t m e e t i n g s wi t h p e o p l e wo r k i n g i n t he wo r k s ho p r e v e a l e d a t t i t u d e s o f s u b m i s s i o n a n d d e p e n d e n c e . M y a t t e n t i o n wa s t he n d i r e c t e d t o t he i n t e r m e d i a t e s t a g e o f l i m i n a l i t y i n t he r i t e s o f p a s s a g e t o q u a l i fy t he c o n fi g u r a t i o n r e s u l t i n g fr o m t he m a i n s t r e a m i n g o f p e o p l e l i v i n g p r e v i o u s l y i n i n s t i t u t i o n s .

O n e o f t he r e s e a r c h p r o b l e m s wa s t o k n o w ho w t he e x p e r i e n c e o f p e o p l e wi t h d i s a b i l i t i e s i n t he l o c a l c o m m u n i t y wa s s t r u c t u r e d . T he hy p o t he s i s o f l i m i n a l i t y he l p e d t o o r g a n i s e a n d m a k e s e n s e o f t he o b s e r v a t i o n s a n d i n t e r v i e ws . T he d i ffe r e n t o b s e r v a t i o n s m a d e i n p u b l i c p l a c e s d r a w t he a t t e n t i o n t o s p e c i fi c b e ha v i o u r s t ha t c o n s i d e r e d t o g e t he r c a m e t o b e m e a n i n g fu l . L e t u s t a k e , fo r e x a m p l e , a s ho r t a n d b a n a l o b s e r v a t i o n : t wo g i r l s e n t e r i n a b a r , wa l k ha s t i l y t o a t a b l e , s i t b a c k t o t he wa l l , o r d e r a b e e r , d r i n k i t q u i c k l y a n d l e a v e a s ha s t i l y t he b a r . I n i t s e l f, t hi s o b s e r v a t i o n ha s l i m i t e d i n t e r e s t , e x c e p t t o p o i n t o u t a r a d i c a l

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d i ffe r e n c e o f b e ha v i o u r wi t h t he o r d i n a r y m a l e c o n s u m e r s . Whe n s i m i l a r o b s e r v a t i o n s a r e r e p e a t e d i n d i ffe r e n t p u b l i c p l a c e s a n d r e fe r t o d i ffe r e n t p e o p l e wo r k i n g i n a s he l t e r e d wo r k s ho p , o n e c a n t hi n k o f a s p e c i fi c c o n fi g u r a t i o n . I n t e r p r e t a t i o n wa s s u g g e s t e d b y B r e t o n t r a d i t i o n a l t a l e s o f t he 1 9 t h c e n t u r y d e s c r i b i n g n i g ht t r a v e l s i n he a t h l a n d s . F o r l o c a l p e a s a n t c o m m u n i t i e s , he a t h l a n d s we r e m a r g i n a l s p a c e s whe r e d a n g e r o u s e n c o u n t e r s c o u l d ha p p e n a t n i g ht b e c a u s e t he y we r e t he k i n g d o m o f s p i r i t s a n d t he r e fo r e fo r b i d d e n t o hu m a n s . H a v i n g d o n e r e s e a r c h o n p e r c e p t i o n s o f s p a c e i n l o c a l c u l t u r e s , I wa s fa m i l i a r wi t h s u c h r e p r e s e n t a t i o n s . I t l e a d m e t o c o n s i d e r t ha t fo r p e o p l e wo r k i n g i n s he l t e r e d wo r k s ho p s , t he l o c a l p u b l i c s p a c e c o u l d b e v i e we d a s a t hr e s ho l d s p a c e , fu l l o f i n s i d i o u s d a n g e r s a n d t he r e fo r e fo r b i d d e n t o t he m . I n t e r v i e ws m a d e wi t h i n d i v i d u a l s wo r k i n g i n t he s he l t e r e d wo r k s ho p we r e c o n g r u e n t wi t h t he s e hy p o t he s e s r e g a r d i n g t he p e r c e p t i o n o f p u b l i c s p a c e , i n p a r t i c u l a r i n t he i m p o r t a n c e o f r o u t i n e s .

U s u a l l y , a t he o r e t i c a l fr a m e wo r k i s t a k e n fo r g r a n t e d whe r e a s t he b a s i c e x p e r i e n c e o f r e s e a r c h, i n q u a l i t a t i v e s t u d i e s , i n d i c a t e s t ha t i t i s p r o g r e s s i v e l y c o n s t r u c t e d i n t he c o n fr o n t a t i o n b e t we e n fi e l d wo r k e x p e r i e n c e , t he o r e t i c a l r e fl e c t i o n a n d p e r s o n a l e x p e r i e n c e . P r e s e n t i n g s ho r t l y a s t u d y i n p r o g r e s s g i v e s o p p o r t u n i t i e s fo r t he s c i e n t i fi c c o m m u n i t y t o d i s c u s s t he a n a l y s i s i n a m o r e r e l e v a n t wa y t ha n b y o n l y e x a m i n i n g t he s o c i o l o g i c a l t e x t i n whi c h t he r o l e o f t he s o c i o l o g i s t a s a u t ho r i s b l u r r e d .

C onc lu sion

Wha t p e o p l e s a y o f wha t t he y d o a n d wha t t he y a r e d o e s n o t i m m e d i a t e l y r e s u l t i n a s o c i o l o g i c a l k n o wl e d g e o f t he i r e x p e r i e n c e . T he r e i s a n e c e s s i t y t o c o n s t r u c t a t he o r e t i c a l fr a m e o f r e fe r e n c e i n whi c h i t g a i n s s o c i o l o g i c a l m e a n i n g s i n whi c h r e s e a r c he r s ha v e a n a c t i v e r o l e . R e s e a r c h o n i n t e l l e c t u a l d i s a b i l i t i e s d r a ws m o r e s p e c i fi c a l l y a t t e n t i o n t o t he c o n d i t i o n s o f c o l l e c t i o n o f d a t a a n d t o t he i n t e r a c t i o n s t a k i n g p l a c e i n t he c o u r s e o f t he s t u d y . I n a d d i t i o n , r e s e a r c he r s a r e c o n fr o n t e d wi t h t he s o c i a l d e fi n i t i o n o f c o m p e t e n c e a n d n o r m a l i t y t o whi c h t he y ha v e t o b r i n g r e s p o n s e s . T hi s c o n fr o n t a t i o n c o n v e y s a n e m o t i o n a l l o a d t ha t ha s a l i m i t e d i n t e r e s t fo r r e s e a r c h i n i t s d i m e n s i o n s o f i n n e r e x p e r i e n c e o f r e s e a r c he r s . H o we v e r , t hi s l o a d ha s t o b e e x a m i n e d i n i t s i m p l i c a t i o n t o d e fi n e t he c o n t e x t a n d t he c o u r s e o f t he s t u d y . F i r s t p e r s o n t e x t s a r e l i a b l e t o r e s p o n d t o m e t ho d o l o g i c a l q u e r i e s o n t he r o l e o f r e s e a r c he r s i n t he p r o d u c t i o n o f k n o wl e d g e .

T he u s e o f t he fi r s t p e r s o n i n r e s e a r c h o n i n t e l l e c t u a l d i s a b i l i t y r e p r e s e n t s a c r u c i a l c ha l l e n g e whe n t he s o c i a l c o n d i t i o n o f p e o p l e wi t h i n t e l l e c t u a l d i s a b i l i t i e s a s a m u t e d g r o u p i s t a k e n i n t o c o n s i d e r a t i o n . T he r i s k i s a l wa y s p r e s e n t t ha t r e s e a r c he r s s p e a k m o r e o f t he m s e l v e s a n d t ha t , c o n c e r n e d b y t he i r o wn a c t i v i t y , t he y r e p r o d u c e t he m u t e d n e s s o f t he g r o u p t he y s t u d y . O n t he o p p o s i t e , t he e ffe c t o f t he p r e s e n c e o f r e s e a r c he r s o n t he p r o d u c t i o n o f k n o wl e d g e ha s t o b e c l a r i fi e d , e s p e c i a l l y whe n

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i n d i v i d u a l s ha v e n o t o r d i n a r y c o m p e t e n c e s t o a c c o u n t fo r t he i r o wn l i fe .

I n m y o p i n i o n , a r e a s o n a b l e u s e o f t he fi r s t p e r s o n p e r s p e c t i v e i n i n t e l l e c t u a l d i s a b i l i t i e s s t u d i e s i s hi g hl y d e s i r a b l e fo r a t l e a s t t wo r e a s o n s . F i r s t l y , r e s e a r c h i n t e r a c t i o n s a r e s o c i a l i n t e r a c t i o n s . Whe n r e s e a r c he r s u s e t he i r p r o fe s s i o n a l t i m e t o d i s c u s s wi t h i n d i v i d u a l s u n d e r s t u d y a n d p a y a t t e n t i o n t o wha t t he y s a y , t he y s e l d o m i m a g i n e t ha t fo r p e o p l e whi c h a r e m u t e d , t he s e m o m e n t s c a n b e a m o n g t he u n i q u e m o m e n t s , o u t o f t he r o u t i n e s o f d a i l y l i fe , i n whi c h t i m e a n d a t t e n t i o n a r e g i v e n t o t he m a n d wha t t he y s a y i s t a k e n s e r i o u s l y . U s i n g t he fi r s t p e r s o n i n s o c i o l o g i c a l t e x t s i s a wa y t o m a k e t he m e x i s t a s p e r s o n s a n d n o t o n l y a s t a k i n g p a r t i n a r e s e a r c h. S e c o n d l y , r e s e a r c h i n t e r a c t i o n s a r e t he p l a c e fo r t he p r o d u c t i o n o f i n fo r m a t i o n o n whi c h t he a n a l y s i s r e s t s . U s i n g t he fi r s t p e r s o n i s a wa y o f v a l i d a t i n g t he fi e l d wo r k a n d t he i n t e r p r e t a t i o n g i v i n g o t he r r e s e a r c he r s t o k n o w a n d t o d i s c u s s t he r e s e a r c h p r o c e s s .

T he p u b l i c a t i o n o f fi e l d wo r k d i a r i e s a n d n o t e s wo u l d b e o f g r e a t i n t e r e s t i n c o n t r i b u t i n g t o r e a l i s e t he t he o r e t i c a l a n d m e t ho d o l o g i c a l b i a s e s i n whi c h r e s e a r c he r s o n i n t e l l e c t u a l d i s a b i l i t i e s wo r k . B e y o n d i t s o wn i n t e r e s t , m y c o n v i c t i o n i s t ha t , c o m b i n e d wi t h a r e l e v a n t s o c i o l o g i c a l fr a m e wo r k , i t wo u l d fa c i l i t a t e a c o m p a r i s o n b e t we e n s i t u a t i o n s o f i n t e g r a t i o n o f i n d i v i d u a l s wi t h i n t e l l e c t u a l d i s a b i l i t i e s s t u d i e d b y d i ffe r e n t r e s e a r c he r s .

R ef erenc es

B e c k U ( 1 9 9 2 ) . R isk society . Towards a new m odernity . L o n d o n , S a g e . C a l v e z M ( 1 9 9 0 ) . L e s ha n d i c a p s m e n t a u x

e t l ’ i n t é g r a t i o n e n m i l i e u o r d i n a i r e : u n e a n a l y s e c u l t u r e l l e . H andicaps et inadaptations 5 0 -5 1 : 3 1 -5 8 . C a l v e z M ( 1 9 9 1 ) . L a c o n s t r u c t i o n s o c i a l e

d u ha n d i c a p . U n e a p p r o c he d e l ’ i n t é g r a t i o n d e s ha n d i c a p é s m e n t a u x d a n s l e m i l i e u o r d i n a i r e . H andicaps et inadaptations 5 5 -5 6 : 8 7 -1 0 6 . C a l v e z M ( 1 9 9 3 ) . S o c i a l i n t e r a c t i o n s i n t he

n e i g hb o r ho o d . C u l t u r a l a p p r o a c h t o s o c i a l i n t e g r a t i o n o f p e o p l e wi t h m e n t a l r e t a r d a t i o n . M ental retardation 3 1 , 6 : 4 1 9 -4 2 3 . C a l v e z M ( 1 9 9 4 ) . L e ha n d i c a p c o m m e

s i t u a t i o n d e s e u i l : é l é m e n t s p o u r u n e s o c i o l o g i e d e l a l i m i n a l i t é . S ciences S ociales et santé 1 2 , 1 : 6 1 -8 8 . C a l v e z M ( 1 9 9 8 ) . L e s c a r r i è r e s

d ’ i n t é g r a t i o n s o c i a l e d e ha n d i c a p é s m e n t a u x : l ’ e n j e u b i o g r a p hi q u e . I n : B l a n c A , S t i k e r H J , e d . L ’ insertion professionnelle des personnes handicapé es en F rance. P a r i s , D e s c l é e d e B r o u we r . C a l v e z M ( 2 0 0 0 ) . L a l i m i n a l i t é c o m m e

c a d r e d ’ a n a l y s e d u ha n d i c a p . P ré v enir 3 9 : 8 3 -8 9 . D e v e r e u x G ( 1 9 6 7 ) . F rom anxiety to m ethod in the behav ioural sciences. P a r i s -T he H a g u e , M o u t o n & E c o l e p r a t i q u e d e s ha u t e s é t u d e s . D o u g l a s M ( 1 9 6 6 ) . P urity and danger. A n analy sis of concepts of pollution and taboo. L o n d o n , R o u t l e d g e a n d K e g a n P a u l .

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D o u g l a s M ( 1 9 7 8 ) . C ultural bias. L o n d o n , R o y a l A n t hr o p o l o g i c a l I n s t i t u t e o f G r e a t B r i t a i n a n d I r e l a n d , O c c a s i o n a l p a p e r 3 5 . D o u g l a s M ( 1 9 8 6 ) . H ow institutions think.

S y r a c u s e N Y , S y r a c u s e U n i v e r s i t y P r e s s . E l i a s N ( 1 9 5 6 ) . P r o b l e m s o f i n v o l v e m e n t

a n d d e t a c hm e n t . B ritish j ournal of sociology 7 : 2 2 6 -2 4 1 . E l i a s N , S c o t s o n J ( 1 9 9 4 ) . The established and the outsiders. A sociological inq uiry into com m unity problem s. L o n d o n , S a g e p u b l i c a t i o n s M u r p hy R ( 1 9 8 7 ) . The body silent. A j ourney into paraly sis, N e w Y o r k , H e n r i H o l t a n d C o m p a n y . M u r p hy R , S he e r J , M u r p hy Y , M a c k R

( 1 9 8 8 ) . P hy s i c a l d i s a b i l i t y a n d s o c i a l

l i m i n a l i t y : a s t u d y i n t he r i t u a l s o f a d v e r s i t y . S ocial S cience and M edicine 2 6 , 2 : 2 3 5 -2 4 2 . O l i v i e r d e S a r d a n J P ( 2 0 0 0 ) . L e « j e »

m é t ho d o l o g i q u e . I m p l i c a t i o n e t e x p l i c a t i o n d a n s l ’ e n q u ê t e d e t e r r a i n . R ev ue franç aise de sociologie 4 1 , 3 : 4 1 7 -4 4 6 . S e n n e t t R .( 1 9 7 7 ) . The fall of public m an.

N e w Y o r k , A . K n o p f I n c . V a n G e n n e p A ( 1 9 0 9 / 1 9 6 0 ) . L es rites de passage. P a r i s , P i c a r d ( t r a n s l a t e d a s : The rites of passage. L o n d o n , R o u t l e d g e a n d K e g a n P a u l ) . T ho m p s o n M , E l l i s R , Wi l d a v s k y A

( 1 9 9 0 ) . C ultural theory . B o u l d e r C o , We t s v i e w P r e s s .

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