Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

home about the conference programme registration accommodation contact

The Construction of Social and Educational Exclusion
Process in Young People: Life History of Desiré

Ángeles Parrilla
University of Seville (Spain)
parrilla@us.es

1. Preliminary Questions

What can we learn from the life history of a young woman of 23 years who finds nothing worth mentioning about herself, has been labelled by society and schools as disabled and sees her life playing out on second stage, marginalised on the road to nowhere?   That is the first question addressed in this paper.

The question that Desiré, the young woman, asks herself however, is a different one, without which our study would have no legitimacy:   How can she prove the value of her existence to others?   How can she make her own worth visible and credible to the eyes of others?

Desiré’s story is part of a broader study (Parrilla y Susinos, 2003; 2005) carried out by the University of Seville and the University of Cantabria, described in this Conference by Susinos (2005).   Employing a biographical-narrative approach, the study examines the ways in which processes of social exclusion among young people are constructed.   The present case allows us to personalise and question so-called universal truths, axioms and established rules regarding both disability and ways of dealing with it.

2. Biographical Profile

Desiré admits she is not used to being asked about herself:   how she feels, what she thinks, etc.   Perhaps that is why she speaks very little.   Answering questions intimidates her and she is surprised that anyone would be interested in her life, a life in which she rarely dares to give value to anything.   She answers with moderation, avoiding eye contact; yet she is discerning and sincere.   If we really listen, she has much to tell us.   She mostly speaks of the weight of stereotypes upon her.   The fact is, when invited to speak, her shy, nerve-filled voice expresses very clear, sensible ideas about the way life has treated her and the difficulties she has encountered along the way.

            Desiré is 23 years old and attends an Occupational Training course for would-be office workers with mental disabilities in the ASPANRI Orientation, Training and Job Placement Centre.   This saves her from the ineffectiveness she would otherwise be condemned to.   Well aware that this may be her only opportunity, she accepts, despite her disappointment with the professional profile the course offers.   She did not choose this profession (she had wanted to study something aimed at helping others, like “Downs Syndrome kids”), but she is used to others making decisions for her.

Desiré’s life plays itself out in a monotonous going and coming between two spaces - the family home and the Orientation Centre - which repeats itself day in and day out as it has for the last two years.   Like the lives of so many others in similar circumstances, her history can be ascribed to the universal argument of her disability and the “logical” conditions derived from her state (“a disabled girl, sheltered and protected by a loving family which comes to terms with her learning and social difficulties, and devises mechanisms and processes to help her which continue into her adult years”).   The issue, basic to all these decisions which have marked her life completely, has to do with an underestimation of her situation, occurring in different contexts throughout her childhood and adolescence.   However Desiré narrates her history using other codes, bringing alternative meanings to light and unfolding before us a life full of paradox.

3. First Paradox: from protection to marginalisation:  “I won’t become independent until they die” (Biographical Interview, 381-382)

Desiré lives with her parents.   Her younger sister (age 20) lived with them too until she became financially independent a few months ago and moved out.   This event was a hard blow to Desiré who felt great affection for her sister and saw in her a model lifestyle which she would like to achieve.

            Desiré describes and perceives family life as restricted, lacking incentives.   To some extent it is a state of “house arrest” imposed by her family and Desiré points out a cumulus of restrictions and frustrations linked to her lack of autonomy and what she feels to be a deteriorated image of herself within the family unit.   This situation is demarcated by a series of special circumstances:

Firstly, the conditions of the neighbourhood in which they live (frequent drug dealing, unsafe areas, etc.) stifle any attempt at normal life.   Desiré’s description of her environs is poignant:   “it’s gone to shit” (Biographical Interview).   She rarely leaves the house in the afternoon except to run an odd errand or visit her paternal grandmother who lives next door.   This seriously reduces her freedom and opportunities for social interaction, a situation which, for a young woman like Desiré, is hard to come to terms with.

Secondly, her mother suffers from epilepsy and requires Desiré to help and accompany her in her free time (afternoons).

Thirdly, her family’s underestimation of her capacity for social interaction results in a negation of Desiré’s right to make her own decisions.   We’ve mentioned that, as a protective measure and in order to avoid problems, she is not allowed to come and go at will.   In the home atmosphere Desiré detects a discriminatory attitude towards her in the little details that make up a person’s daily life.

Question:   What do you do in your free time?   Do you go out?

Answer-   I don’t go out.

Question:   You don’t go out?

Answer-   No.

Question:   Why not?

Answer-   Because my mother doesn’t let me either.

Question:   Never?

Answer-   Only for ASPANRI stuff.(Biographical Interviw, 463-419)

But beyond that Desiré clearly perceives discrimination in relation to important life projects.   While one of her aspirations is independent living, she is aware she would need some help and is very straightforward when she says this will only be an option when her parents die.   The stereotyped image she has of the role society still holds for women – childbearing, mothering and sexually satisfying – underlies the frustration she feels about her situation.   Desiré aspires, she says, “like everyone else to have a boyfriend and my own family”(Self-Introduction, 32-33), and is aware of the hurdles in the way.

The tendency to undervalue Desiré directly affects the value given to her role within the family.   She habitually does chores and housework in addition to looking alter her mother.   However, her perception of the way her family sees and interprets this help is negative.   She repeats again and again that she is scolded and that her work is unappreciated.   Once again, her home life is a source of unpleasant experiences for Desiré, who feels humiliated by the lack of recognition she receives from her family.

Question:   Why do they normally scold you at home?

Answer-   Um, they scold me most for not doing the chores, not washing up good and all that.

Question:   And what do they like about you, about what you do?

Answer-   What do they like, um… nothin’, almost nothin’.   Nothin’, I don’t think they like nothin’.

Question:   Why not?

Answer-   I don’t know, cause I don’t do things right.

Question:   Because you don’t tidy up, something about school, what don’t you do right?

Answer-   Cause I don’t do chores right. .(Biographical Interviw, 365-372)

Finally, to finish this sketch of Desiré’s family life, we should mention the feelings of “abandon” brought on by the absence of her sister, whom she especially misses.   The relationship between the two is made even more difficult by incompatible schedules (the sister’s evening shift at a bowling alley impedes spending time with Desiré when she visits the family).   When asked to show us her most cherished photo she chose a close-up of her sister, illustrating the central role she plays in her life.

    “...cause I love her a lot.   She left home and I’m so sad; I miss her.”   (Picture Technique, 12-13)

Question:   ...so, when you see her, what happens?   Do you go see her or does she

come to visit you?   How’s that work?

Answer-   She comes to see my mother.

Question:   When?

Answer-   Cause she comes to see my mother.

Question:   She goes to see you and your mother.

Answer-   I’m not here, when she comes I’m not here.

Question:   Ok, I see, so when she goes, you’re not there.

Answer-   No.

Question:   Why not?

Answer-   Cause I’m at school.

Question:   And does she know how much you love her?

Answer-   Yeah.   ( Picture Technique ,97-109 )

1. Second Paradox:   Rampant exclusion in the context of formal Inclusion.

“… they were really mean. My classmates didn’t wanna sit nex to me never .”( Line of Life, 110-111)

Not only in her family life does Desiré face different forms of discrimination.   Similar behaviour in others comes both from society in general and from individuals she comes into contact with.   Discrimination is not a private, intimate experience for her, but rather comes from social institutions, in the public sphere.   Although sometimes involving strangers, the discriminatory processes which have excluded her more and more, have taken place for the most part in the presence of other people --very frequently professional educators-- who have simply accepted them (passive discrimination) or never even been aware that they were occurring.   Specific protagonists of such situations affecting Desiré include schoolmates who have directly humiliated her as well as teachers whose educational activities, or lack thereof, have indirectly contributed to and reinforced the image she holds of herself as marginalised and useless.   Desiré remembers and retells each one of these episodes as if they had occurred this morning.

The framework for Desiré’s schooling is ordinary education.   As a very young girl she attended a preschool (Centro de Educación Infantil) in Zaragoza, where she lived until the age of ten.   She went on to attend another preschool, and Primary education through secondary school in Sevilla.   Her experience in these different schools --with the exception of the Zaragoza preschool ( “I was real happy, there they didn’t pick on me so much” Biographical Interview, 82 )—was notably different than the average experience of children without disabilities.   Here are some of the main characteristics of that experience.

1- Desiré’s bitterest and most repeated memory is that of being rejected by her schoolmates.   Her history brings to light that this type of discrimination occurs in virtually every single one of her activities in Primary School.   It is a particularly painful form of rejection because it manifests itself in humiliating comments and attitudes which she herself senses are due to her being disabled which persist throughout her entire schooling and in turn greatly limit her opportunities for social interaction at school.   She doesn’t remember a single friend from this period of her life.

Answer-   I went to X School, but they really treated me bad.   My classmates, they didn’t eve

wanna sit next to me.

Question:   Why did they do that, do you remember?

Answer-   Don’t know, must’ve thought I looked retarded or somethin’, an’ didn’t wanna sit next

   to me.   They made faces at me...

Question:   They didn’t want to sit next to you?

Answer-   No.

Question:   How did they reject you?

Answer-   They turned their backs on me. (Biographical Interview, 213-221).

2- Support activities too contributed to Desiré’s exclusion. Recalling her schooling she puts her finger on the wound, drawing sharp attention to the shortcomings of a supposedly integrative measure, one of the darlings of our school system, in response to the diversity of needs among students:   Support Classrooms and the activities carried out there.   Desiré blames Support Classrooms in Primary School for triggering rejection from her peers as well as for failing to help her integrate.   She was the only one of her group to attend Support classes.

3- Equally critical is Desiré’s memory of her isolated presence in the classroom, sitting alone at the back doing the same activities as her classmates, completely deprived of teaching methods adapted to her specific learning needs.   From this approach, Desiré’s failure to learn could be explained as not owing to her disability, but rather fruit of difficulties springing from tasks and activities which themselves failed to incorporate the strategies, methodologies and support models she was in need of.

Question:   Did you do different activities in class?

Answer-   No, same, we copied a book and we took a book and copied from the book.” (Biographical Interview, 607-608)

4- Only her personal relationship with some of her teachers is left unscathed by Desiré’s testimony.   She tells us she got on “real bad and good” with them depending on whether they showed an interest and got involved with her or not.   Desiré denounces lack of attention on the part of teachers (“they ignored me”) as discrimination.   Taking this a step further, as we said before, the permissiveness of unmoving and discriminating behaviour is by default another form of passive exclusion.

Question:   How did you get on with your teachers?

Answer-   Real bad and good; both ways.

Question:   Well, why’s that?

Answer-   Because they ignored me sometimes.

Question:   They ignored you?

Answer-    Not sometimes, others yeah. (Biographical Interview, 1100-1104)

1. Third Paradox:   A specific, segregated context in which Desiré is first exposed to “Integration”.

Everything changes for Desiré, however, when she is transferred to a Secondary School on finishing primary education.   Here she enrols directly in a parallel track –a Social Guarantee Programme (PGS)-- where she is not subjected to contact with main-track Secondary students, and partially recovers her badly damaged self esteem and ability to interact with others.

Desiré’s view of her relationship with peers changes drastically. She emphasises how both classmates and teachers help her with her schoolwork.   At her new school she liked painting class and makes no reference to anything she did not like.   This is when she begins to have friends as well:   “One girl named Laura, who is deaf, deaf and dumb.   A boy named Diego, Israel and that’s it” (Biographical Interview, 300-301). It is also when she meets her first boyfriend, whom her mother advises her to break up with because Desiré thinks he takes drugs:   “I dumped him ’cause he snorted coke” (Line of Life, 561)

Leaving aside the issue of whether the PGS house painting and wallpapering course was ideal or not, for Desiré it represents the end of the discrimination and harassment she suffered through in previous phases of her education.   Yet her only allegation in defence of the school is the egalitarian treatment she receives, allowing her to not feel intimidated.   At the end of the day a special context, just the opposite of what she wanted for herself, is her salvation; so much so that when asked to think about which aspects or episodes of her schooling she would go back and change, or omit completely, her response is crystal clear: she would erase her entire Primary education yet keep her Secondary education experience intact.

Question:   If you could go back and change anything about your store, about going to school –-

 first to X School and then to Secondary School, would you change anything?

Answer-   Everything.

Question:   Everything?

Answer-   Everything.

Question:   Let’s see, for example, tell me something you would change.

Answer-    Everything ’bout X School (Primary School), nothin’ ’bout Y School (Secondary

School).

Question:   You mean you wouldn’t have gone to X School if you’d had a choice. Why not? Answer-   ’Cause they treated me like crap. (Biographical Interview, 338-448)

1. Solutions -- Constructing a new social identity for Desiré:

“ The importance of training to learn things, somethin’ for the future; not to be in my house all day, cleanin’ and all that. ” (Biographical Interview, 236-239)

Desiré never finished Secondary school nor the Social Guarantee Programme (PGS).   One of her teachers told her about the possibility of continuing her studies in the ASPANRI Orientation, Training and Job Placement Centre when she turned 20 and she enrolled in an Occupational Training course for would-be office workers.   It is interesting that she does not really like the course, yet is willing to suppress her feelings because she feels she benefits in other ways, both socially and personally.   The course, for Desiré, is mainly an escape valve for the pressure and exclusion imposed by her home life.

Question:   Why did you want to take the course?

Answer-   Because… I liked doing office course, not be home bored, so I came down here..

Question:   OK, tell me something now about ASPANRI.   How do you feel there?   What can you

 tell me about that experience?

Answer-   I’m very happy at ASPANRI.

Question:   You’re very happy?

Answer-   Yes.

Question:   Why? I always ask you why, but it’s because I want to know what things you like and

 what things you don’t like.

Answer-   Because I’m proud to be there.

Question:   What are you proud of?

Answer-   Of not bein’ bored at home.

Question:   And why, apart from not being bored at home, why do you value being here?

Answer-   To learn things, somethin’ for the future; not to be in my house all

day, cleanin’ and all that. (Biographical Interview, 281-296)

Yet the course is also an open door to a possible career which Desiré perceives as very far away.   Her only work experience to date was not satisfactory because it was limited to mechanical, individual work in a post office which she experienced as a new situation of marginalisation and exclusion.

Question:   So have you ever had a job?

Answer-   Yes, a training position at the post office.

Question:   Did you like it? What did you do ?

Answer-   Nothin’, stick stamps on envelopes all day, so I quit. (Line of Life, 124-132)

The real impact of this new education experience for Desiré is in the socio-affective arena. The image of an isolated, marginalised Desiré which began to metamorphose during Secondary school, has taken shape in the present education context, undergoing substantial changes.   She has found a place for herself at ASPANRI and is aware of being happy and satisfied.   There is evidence of a new, much changed, social identity in the works.   Now Desiré is very popular around the centre and she feels more and more confident and proud of herself.   She even started a new romance which, though short-lived, has given a much need boost to her self esteem and reinforced her capacity for social interaction.

In short, once again we find ourselves facing the paradox that it is within the “special” context that Desiré discovers opportunities for self development versus the open rejection and discrimination is exposed to in socially “normalised” contexts.   Desiré’s history clearly and fiercely questions the very existence of a social consciousness of discriminatory processes and exclusion suffered by disabled people.   The society Desiré has had to face is not even sensitive enough to perceive that it discriminates.

1. Synthesis of sorts:   What can Desiré teach us about constructing processes of exclusion and disabled people?

I will take the liberty here to use an expression which I’ve borrowed from the disability movement (UPIAS).   I’ve chosen to do so because, better than any other, it reflects Desiré’s wants and needs:   “Nothing for us without us”.

The greatest challenge Desiré faces, as with many others with disabilities, is being heard and convincing the mainstream population that they do not pertain to a separate class of people for which others can think, feel and decide.   Integration with the mainstream, on those terms, is far from being a reality for people like Desiré.   The conjunction of disabling obstacles, both family and school-related, has had an extreme effect on Desiré.   In fact, only in contexts out of the social mainstream have her rights as a citizen, as a productive person, been recognised and respected.

The greatest challenge facing mainstream society, on the other hand, is taking advantage of the opportunity to learn from disability; to learn from what has always been the untold history of disabled people:   their situation, their experiences, their feelings and ideas.

Throughout her life, Desiré has faced a series of hurdles which are much taller than her certified disability:   stigma, indifference and exclusion.   We will briefly review each of these hurdles and the form they have taken in Desiré’s experience.

1- Spoken Discrimination:   Situations of exclusion and marginalisation that are not linked to specific activities (such as being excluded from groups, job opportunities, etc.).   These are episodes of discrimination which manifests itself as rejection, contempt or indifference.   Comments like “ignore you, scorn you, insult you”, “they look at you like you’re a freak”, or “they talk behind my back” are good examples of this form of exclusion.   It is this type of “socio-affective” exclusion that Desiré has experienced directly, in many cases referring to her family, teachers and peers:   “they don’t think I’m capable” or “they say I’m bad at everything”.

2- Discrimination by Deed:   Processes of segregation due to specific actions and activities which lead almost inexorably to exclusion.   Physical marginalisation in the classroom, special education tracks (Support classrooms in Desiré’s case), family impositions restricting social interaction to time spent in the ASPANRI Orientation Centre, or isolated, routine work conditions at office training courses, etc., are some examples of this type of discrimination.

3- Discrimination by Omission:   Desiré has faced a third type of hurdle, fruit of passive acceptance on the part of others and coexistence with discrimination and exclusion without taking action to stop it.   The clearest example in this case is that of Desiré’s “unknowing” teachers in situations of exclusion and verbal violence perpetrated by classmates and which Desiré was exposed to.

4- Well-intended Discrimination:   We made reference to type of discrimination when analysing the protective attitude of the family which leads to reclusion at home and denying Desiré such vital, fundamental rights as social interaction with her peers.

Desiré has run into hurdles in many areas which have impeded her from living a fulfilling life and participate on equal terms in the activities people without disabilities carry out daily.   These hurdles have appeared in the most crucial spaces for development, for Desiré or for anybody for that matter: at school and at home.   Though Desiré has managed to find resources and strength with which to overcome such hurdles, her future is far from bright.

REFERENCES

Parrilla, A. y Susinos, T. (dirs.) (2003).The construction of the social exclusion process in young women: origin, forms, consequences and implications for training.  I+D Project. Instituto de la Mujer. Expte. 90/02 0000245 1 010112003.

Parrilla, A. y Susinos, T. (dirs.) (2005) The construction of the social exclusion process in young people: A guide for the detection and assessment of exclusion processes (Cantabria and Sevilla). I+D+I 2004-07 Department of Education .   Ref.: SEJ2004-06193-C02-02/EDUC.

Susinos, T. (2005).The construction of social exclusion process in young people. A biographical-narrative approach. Paper presented at ISEC, Glasgow.

home . about the conference . programme . registration . accommodation . contact