Listening to Megan: Narratives of A Female Aboriginal Youth With a Disability

By Cynthia Fey
                  SSTA Research Centre Report #02-06: 55 pages, $14

Table of Contents

Chapter One: Resilience, Youth, and Disability

An Unexpected Friendship
A Special Invitation
June 18, 1999 - Graduation Day
Chapter Two: Voice and Empowerment
Feminist Literature: Grounds for an Empowering Approach
Race, Identity, and Difference
Aboriginal Peoples in Canada and Disability
Voice of Disability Literature and Youth
Chapter Three: Celebration of Life
Education and Knowledge
Survival and Resilience
Freedom
"Every human has limits"
"Don't get your underwear in a knot"
Peer Friendship
End Notes

Recommendations

References

Overview

This report is a summary of a Master's thesis by Cynthia Fey, University of Saskatchewan. 

The study chronicles the decade-long friendship between two unexpected friends: a researcher/educator and an Aboriginal youth, who describes herself as an "adventurous teenager in spirit".  In a shared narrative between "Megan" and myself, I investigated what it means to be a female youth with a disability.  Using narrative methodology, I taped conversations while the participant was attending Grade 11 and Grade 12.  The two types of data that appear are text from the interviews themselves and the emerging story from the participant's reflections upon the text.  Through short stories, poems, songs, and plays, Megan conveys her realities and life experiences.  The themes arising include: resilience, freedom, feminine desires, disabilities, and youth identity.  The study emphasizes self-determination of youth with disabilities in both content and methodology as the participant collaborated in co-editing and analyzing her own words.  A forum is provided for a currently marginalized voice to be heard and empowered.
 


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Chapter One: Resilience, Youth, and Disability

An Unexpected Friendship
I first met Megan ten years ago at Camp Easter Seal.1  I was working as a camp counselor to expand my understanding of children with disabilities.  Megan was one of six children grouped together in my cabin for an eight-day camp.  Long after camp was over, Megan continued to telephone me and talk about her school experiences, friends, crushes, and dreams for the future.  Our friendship was somewhat unanticipated.  I am about twenty years older than Megan and now have two preschoolers.  My preoccupation has been with baby feeding, dirty diapers, play dates, and trying to balance part-time work with my studies.  What do we have in common?  Certainly, it is not music.  I remain a die-hard Patsy Cline fan, with my favorite dance tune being the romantic "Walkin' After Midnight".  Megan's reaction to my song is, "Oh God!  Big generation gap here, and I mean BIG!!"  No mention is made of the words themselves, despite the fact that Megan has never walked. 

Megan mimes an air of superiority as she tells me that "she" prefers "modern" music, such as Devil Without a Cause, by Kid Rock.  The words in Rock's music express Megan's emotions vicariously through the singer's voice.  Megan listens to music and watches films more than anyone in my circle of friends.  If you ask her, she can recite the words to some songs, screenplays, and stage plays.  Megan is a collector of words.  These words become integrated into Megan's self-expression and the meanings she conveys.  As Kid Rock's song will tell you, Megan wants everybody to know her name.  She wants her story known.  She wants people to stop talking to her as if she is "slow" or spending time with her, because they feel sorry for her.  Instead, Megan implores people to, "Treat me normally, like an ordinary human being."

Before I asked Megan to participate in the study, I spoke with Megan's mother to get her approval for the research proposed.  I knew Megan would be mad at me for doing this because consulting her mother undermined Megan's own self-determination.  But, I did not want to create conflict in Megan's home.  Megan's mother agreed that a thesis about Megan's life was a good idea.  But, she added that it was up to Megan to decide and I should ask her.  Megan quickly agreed that a thesis based on her life stories and experiences would be something meaningful to her and important for others to hear.

Later, I asked Megan if she thought it was necessary for me to get interview permission from an Elder in the community where she is registered as a treaty Cree Indian.  I used the word "Indian" because that is the word used in legal documents, however, First Nations peoples have always been First Nations.  Megan responded to my question about obtaining permission in a raised voice:

I rarely visit my reserve.  I'm not representing my band.  I'm not representing any other Indian in the Province or country.  I'm representing myself.  I believe in the proper protocol.  If you are talking about other people in the Aboriginal community or interviewing Elders, then you would need to give tobacco and ask permission in advance.  I respect my Elders.  But, in all honesty, I have never turned to an Elder.  Since this thesis is about my story, I don't need permission.  I choose my own path in life.
After hearing Megan's words, I felt a certain respect for the way she negotiates different aspects of her life.  She is strong.  She is growing in wisdom.  I am fortunate to share a path with her for part of the way.  It is a path that we created together through friendship and collaboration of this research.
"Friendship," said
Christopher Robin,
"is a very comforting
sort of thing to have."
(A.A. Milne)


"Oh God! Big
generation gap here,
and I mean BIG!!"
No mention is
made... that Megan
has never walked.

"Everybody knows my
name, they say it way 
out loud.  A lot of folks
fuck with me, it's hard
to hang out in
crowds."2

  (Kid Rock)


"I want them to know
what I think and how 
I feel.  Treat me
normally, like an
ordinary human
being."

It is important to
follow proper
protocol when
seeking permission to
conduct research
with Aboriginal
peoples.

"I respect my Elders.
But, in all honesty, I
have never turned to
an Elder.  Since this
thesis is about my
story, I don't need
permission."

The Family of Megan
Will be honoured if
You could join them
For a Special
Graduation Dinner
June 18, 1999


Table of Contents


A Special Invitation
Megan and I live a few hours away from each other.  But, when I received her graduation dinner invitation, I knew that I would find a way to be there even if it meant renting a car.  Finishing Grade 12 was no small feat, and it was important to celebrate this turning point in Megan's life.  As I travelled down the winding highway, past tall evergreens and deer shadows, I thought about the significance of Megan's graduation in a broader educational context.  I know the school-leaving rate for Aboriginal students is far higher than for non-Aboriginal students.  Megan's physical disability in addition to her ancestry and gender left her vulnerable to a number of barriers in completing a Grade 12 education.  However, Megan may not necessarily see herself as systemically discriminated against because of her ancestry or gender at this point in her life.  Megan views her physical disability as the primary thing many people react to in a negative way.  Since this study is primarily concerned with Megan's viewpoint, I wondered what meaning graduation had for Megan.

Arriving at the banquet room of the hotel, I saw about forty friends and relatives gathering in small bunches of conversation.  Megan and I hugged each other sideways as my pregnant stomach pressed against her steel wheelchair.  The expression on Megan's face gave a mixed review of the day.  She looked uncomfortable with all the attention, and at the same time, she seemed to be enjoying it.  Megan rarely feels that she deserves to be singled out, and whatever you do, don't call her special.

I placed my gift at a table with the others and began taking photographs for Megan's guest album.  It was like being at a wedding.  I was struck by the incredible feeling of support in the room.  During the research for my thesis, I had not fully realized Megan's community of support.  Significant people included Megan's mom, dad, brother, friends, aunts, uncles, a big sister from years gone by (i.e., Big Sisters organization), nieces, nephews, cousins, and a teacher aide.  All the people there were important in Megan's life.  Megan's grandmother was unable to make the trip, but she was there in spirit.  There was an elaborate meal, followed by a gift opening and speeches from family and friends.  I remember snapshots of words used in people's speeches as:

"Megan is my best friend, and I love her."
"Don't quit."
"Megan is my biggest hero."
"My gift to you is a poem that I wrote from the heart."
"She has taught me a lot about what it is like to living with a disability."
"She is a role model."
"We're very proud of what Megan has accomplished."
"It wasn't always easy."
Megan's accomplishments go far beyond graduating from Grade 12.  She is a model of resilience in adversity.  Despite being emotionally hit on a daily basis by people who misunderstand her, Megan continues to be positive about the future.  Physical challenges also require patience when Megan's body does not cooperate with what she wants it to do and patience when a revolving door of home care workers often results in strangers trying to fulfill very personal physical care.  The meaning of Megan's resilience cannot be fully understood unless a person actually lives her experience as Megan's mom says, "I don't know what it is like to be her, so I really can't say".  This is a comment that has stuck with me for years because Megan and her mother are so incredibly close.  I think nobody knows Megan better than her mother.  Yet, Megan's mom still acknowledges and respects that the real expert on her daughter is Megan herself.
"the leaving rate for
Grade 12 Aboriginal
students was 103
percent for the school
term compared to 23
percent for non-
Aboriginal students"
(SK Ed., 1999)3
Megan's physical
disability, Aboriginal
ancestry, and gender
left her vulnerable to
a number of barriers
in completing Grade
12 education.
 

The word "special"
has been so over used
when referring to
people with
disabilities that it has
lost its meaning as
Megan states, "How
can you call someone
special when you
don't even know
them?"
 
 
 

Despite being
emotionally hit on a
daily basis by people
who misunderstand
her, Megan continues
to be positive about
the future.
 

The real expert of a
research participant
is the research
participant.


Table of Contents


June 18, 1999 - Graduation Day
The graduating class of 1999 jostled one another in the halls as they put on their hats and gowns.  It was an extremely hot morning.  Students talked about graduation, how good it was going to be, and how nervous they were.  Nobody had much sleep the night before.  Group photographs were scheduled in front of the cathedral that was across the street from the school.  Megan was the first to arrive at the steps.  Her white gown covered the chair.
MEGAN.  (Narrating.)  There were cameras all over the place in front of us.  Parents with cameras, TV crews, and everything.  I remember the conversation a friend and I had.  There were a few people late.  As they were rushing over to join us, Laura yells, "It looks like some of us should go back to Kindergarten and learn how to tell time!"  I said, "Way to go!"  It's boiling hot, we want to get this over with, and here are photographers waiting for students who are late.  Laura is pretending to get mad and she's screaming at them.

Grads in blue were on top.  White gowns filled the middle and bottom rows.  The photographer had to get everyone's attention by using a cheezy word--party--to get everyone to smile.  "O.K. everyone say, party."  We complained, "Ah, come on," because we wanted to get going.  "Just one more," the photographer pleaded.  "Party!"

It must have taken at least a half hour for photographs.  If it wasn't a half hour, it seemed like it because it was so hot.  All of us were saying to each other, "F---, I'm hot!"  We had this thing with cursing.  I think that as great as it is to graduate and get your diploma that it is a real piss off getting ready for it.  It seems like you are never going to get it over with, and it costs so much money.

[After photographs, students rushed back to the school].  Then everyone stumbled into alphabetical order in the hallway leading to the gym.  For a while, we were [talking in line], but when it started we were told to be quiet, so we started whispering to each other under our breath.  Some of us were crying because it was so unreal.  It was as if we were in a dream.  Some of us were saying, "Let's get this diploma and get this thing over with."  Some of us were feeling like, "This is not happening.  I'm not ready for this yet."

I smelled sweat.  I smelled the school.  It always smells like some cleaner.  It's not necessarily a bad smell, but it smells.  I thought, "I'll probably just walk into this school one more time after this and then it is done and over with."  It's hard because knowing that this was your school.  It is like you have to talk about it in the past tense.  You cannot talk about it in the present tense, because it is no longer your school.  That was kind of hard.

"O Canada" started playing as the ceremony began.  Graduates filed into the gym from the hallway.  Megan sat silently watching her classmates walk up on stage and take their right of passage from high school student to graduate:
MEGAN.  (Narrating.)  They went up the stairs of the stage, across the stage to get their diplomas, and down the stairs at center stage.  At the center stairs there were two police officers on either side of the small staircase.  Whenever a female student was coming down the stairs, either the cop on the right or on the left would take that girl's hand and guide her down the stairs.  One of the officers was in his 50's; but, the other officer was in his 20's.  I was thinking, "Oh, what a hunk!  The guy's got blond hair, nice face, high cheek bones . . . Oh, shit!  He's not going to be able to grab my hand."  So that was kind of sucky. (Upset.)  Just knowing that my peers were walking across the stage was kind of hard.  No, it wasn't kind of hard.  It was hard! (Voice cracking.)  When I went to get my diploma, I just went to the foot of the stairs [leading up to the stage].  The Vice-Principal came down the stairs and gave me my diploma.  It just wasn't the same.
The melody from The Lion King, "Can You Feel the Love Tonight?", echoed in the room.  Slides of the Grade 12 graduates captured some of the most embarrassing and honest representations of students on an average school day.  A 1984 graduate gave his speech about what Megan and her classmates might do with their lives.  Megan thought it was really cool.  In giving advice, the past graduate talked about what the real world was like.  What did he know about the real world for Megan?
MEGAN'S CLASSMATES.  (Excited giggles.)  Megan, what time are you going to the grad tea?

MEGAN.  (Flicker of disappointment crosses her face.)  I'm not going.  I have to test out a ramp for tonight's Grand March.

That evening Megan was the very first one to go up on the Grand March stage.  Everybody hooted and hollered.  Finally, a sense of belonging and public recognition for her accomplishment.  Megan's best friend yelled, "Megan!" so loud that Megan's face turned red in part embarrassment and part delight.

Megan looked stunning.  Her dark hair was pinned high with soft waves cascading down.  Emerald costume jewellery framed Megan's face.  She was wearing a specially made gown of deep forest green, with lace embroidery that was somewhat reminiscent of the dress "Titanic" star, Kate Winslett, wore for the 1998 Academy Awards.  Long satin gloves, a lace draw-string purse, and matching shoes accented the crushed velvet dress.  All that was missing was Leonardo Di'Caprio himself.  Megan beamed with emotion.

After the graduates marched up and down the runway, they circled back to the stage for one last goodbye as the Class of  '99.  Megan wheeled around to the stage ramp and stopped dead.  The ramp that Megan had tested, instead of going to Graduation Tea, had been moved away from the stage and out of the way.

MEGAN.  (Narrating.)  It was kind of hard, because everybody else was on that stage at the end [except me].  Everybody gave their applause.
Graduation day characterizes most of Megan's twelve years of education.  Well-meaning educators have continually undermined Megan's confidence and integrity through their actions or lack of actions.  Megan tries to see past the injustices and envision what is "not yet."  There is no blame. There is a fresh and forever hopeful attitude toward life that makes you want to say, "I would like some of that." or "I wonder when I lost that?"  When human decency and goodness does not prevail, Megan seriously analyzes the flaws in her real life character as she would in a fictional character written by Shakespeare.4  Even when there is hurt, there is forgiveness.  However, Megan is getting tired of always being the one to conform, to settle for less from the education system, and to be the teacher. Often, the first thing people see or talk about is her disability: cerebral palsy.  Judgements are made about what Megan can and cannot do with little attempt to know Megan as a whole person.  Megan says, ďItís really confusing.  I want them to know that I am in a wheelchair; but at the same time, I do not want them to see the wheelchair.Ē  Current literature provides little in the way of understanding Meganís unique perspective.  Megan has valuable insights and is capable of theorizing, but she has not had a forum to communicate her messages.

Talking about life in this study presents Megan's stories from her personal experiences.  The stories are told through conversations and the text of poems, short stories, songs, and plays.  Megan participates with me in the interpretation and analyses of these stories to ensure that we understand her intended meanings.  Although reflections and analysis of Megan's stories occur in relation to the academic literature, my intention is not to fit Megan into some existing theory.  Instead, I open the possibility for new theory to emerge from Meganís stories and our collaborative analyses. This form of knowledge is important for educators because it allows educators to see the contradictions between what is often thought to be meaningful to and of value for students with disabilities, and what really could be meaningful and valuable to them.  We hope that in some way, educators will become more equity conscious in their teaching practice, curriculum adaptation, education policies, and research.

Throughout the research process and product, I offer a forum for a currently marginalized voice to be heard and empowered.  To me, empowerment means Meganís active participation in presenting her stories and conveying their meaning in a format that represents her communication style.  Empowerment means the opportunity for Megan to say what she wants in life.  It means to re-appropriate herself from institutional definitions, labels, and descriptions of people with disabilities.  Empowerment issues go beyond Meganís school experiences since school life interacts with home and community life.

Of particular importance, this research emphasizes self-determination of youth with disabilities, both in content and in methodology.  Megan shares her life experiences, analysis, and suggestions for change.  She self-consciously directs her stories primarily to educators and school administrators, but also to people involved in the intersecting areas of health, government (band, provincial, federal), and law.  This research does not attempt to generalize the experiences of one person with a disability to other people, because it recognizes the disabled experience as unique for each person.  However, since each individual's experience "both shapes and is shaped by society's attitudes toward people with physical disabilities in general", it was valuable to fully investigate one person's experiences (Scherer, 1993).  The research process involved the participant as a collaborator, that is a co-writer and co-editor from beginning to end.  The purpose of emphasizing self-determination in this study was to offer one intimate first-person account of what it is like to be a young Aboriginal woman with cerebral palsy.

This account is distinctive because it empowers its participant to express what is most important to her within a supportive and collaborative framework using narrative methodology.  It was very important that the format for this research be reflective of Megan's style of communicating her meanings.  In the writing of the research, I make connections between Megan's stories, reflections, and analysis with a broader theoretical discourse on the need for voice and empowerment of youth, women, First Nations/Métis, and people with disabilities. In addition, the report provides an analysis of the research themes of resilience, freedom, feminine desires, disabilities, and youth identity.  Implications and recommendations arising from the research are included.

This study is not for those who want to better understand cerebral palsy as a physical disorder.  This research does not provide medical descriptions or detailed accounts of cerebral palsy itself.  Megan does not deny that she has cerebral palsy, but in her own words, ďLetís not talk about that right now.  Letís talk about life.Ē  Similarly, Megan does not deny her Cree Nation heritage.  Megan explains that she "may not practice the physical aspects like the powwow dancing, but the values and respect for people is strongly there."  Although these are all aspects of Megan that are disclosed through her stories and reflective analyses, Megan does not want people to see her(self) in fragmented parts.  Therefore, this study invites the reader to see a person who has hopes and dreams like any walking human being; to see a person who is ready to conquer anything regardless of gender, race, and disability.  This study is about being human:

At another time she asked, 'What is a soul?' 'No one knows,' I replied; 'but we know it is not the body, and it is that part of us which thinks and loves and hopes . . . [and] is invisible . . . . 'But if I write what my soul thinks,' she said, 'then it will be visible, and the words will be its body.' 
(Annie Sullivan, 1891)5
"O.K. everyone say,
party."
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

"All of us were saying
to each other, "F--,
I'm hot!"  We had
this thing with  cursing."
 

"Some of us were
crying because it was
so unreal.  It was as
if we were in a
dream."
 

"It's hard because...
it is no longer your
school."
 
 
 
 
 
 
 
 

"When I went to get
my diploma, I just
went to the foot of the
stairs [leading up to
the stage where my
peers stood].  The
Vice-Principal came
down the stairs and
gave me my diploma.
It just wasn't the
same."
 

What did he know
about the real world
for Megan?
 
 
 

"I'm not going [to
grad tea].  I have to
test out a ramp for
tonight's Grand
March."
 
 
 
 

Megan looked
stunning.  Her dark
hair was pinned high
with soft waves
cascading down.
 

The ramp was moved
away from the stage.
 

"Everybody else was
on that stage at the
end [except me]. 
Everybody gave their
applause.
 

Megan is getting
tired of always being
the one to conform, to
settle for less from
the education system,
and to be the teacher.
 

"It's really confusing.
I want them to know
that I am in a
wheelchair; but at the
same time, I do not
want them to see the
wheelchair."
 

Instead of fitting the
participant into an
existing theory, the
possibility for new
theory emerges from
the participant's
stories and
collaborative
analysis.
 

Contradictions exist
between what is often
thought to be
meaningful for
students with
disabilities and what
really could be
meaningful.
 

This research
emphasizes self-
determination of
youth with 
disabilities, both in
content and
methodology.
 

The research process
involved the
participant in all
stages of the research
as co-writer, co-
editor, and co-analyst
of her own words.
 

This study validates
narrative research
and methodology as a
way of knowing.
 

This study is not for
those who want to
better understand
cerebral palsy as a 
physical disorder.
 

This study is about a
person who has
hopes and dreams
like any walking
human being... This
study is about being
human.


Table of Contents


Chapter Two: Voice and Empowerment
This literature review discusses the need for the "voice" of all people to be heard and understood as well as the need to create and support avenues for empowering those voices.  This review examines feminist literature that clarifies the meaning and importance of voice, discusses forms of discrimination and privilege which underlie issues of equity for all Aboriginal people including those with disabilities, and identifies studies related to youth and disability.


Table of Contents


Feminist Literature: Grounds for an Empowering Approach
Feminist literature on voice and empowerment includes analysis of women and literacy (Walsh, 1996), feminist theory (Pawlovich, 1996;  Reinharz, 1992; Haraway, 1991; Wendell, 1989), women's development (Briskin, 1994; Gilligan, Lyons & Hammer, 1990), women and art (Chadwick, 1996; Parker & Pollock, 1987; Nochlin, 1988, Hedges & Wendt, 1980), womenís biographies as a genre (Iles, 1992), and feminist interview techniques and analysis (Anderson & Jack, 1991).  These authors challenge dominating forces in society that create knowledge bases and design social structures which maintain and recreate power and privilege.  Much feminist literature provides a critical edge that makes it possible to question who is excluded from the process of creating knowledge and from the representation of knowledge in standards, norms, or truths (Gregory, 1996; Kirby & McKenna, 1989).

The principal characteristic of much feminist research is the strong belief that womenís experiences and concerns need to be validated.  This validation occurs by including women's experiences in research theory and approach to ensure that their values, thoughts, and perspectives are recognized as part of what becomes acknowledged as reality.  Many feminist approaches, therefore, challenge traditional notions of what knowledge is important.

Although much feminist literature may not directly relate to young women, it can be applied to young women.  Women of all ages share a sense of space in a patriarchal society as their psyche is affected by the dominating forces that feminists challenge.  Feminist literature that does directly investigate the lives of young women include Margaret Finders' research, Just Girls: Hidden Literacies and Life in Junior High (1996); and Linda Christian-Smith's work, Texts of Desire: Essays on Fiction, Femininity and Schooling. Critical Perspectives on Literacy and Education (1993).

Finders (1996) critically examines the role literacy plays in the social development of girls.  Literacy is defined broadly to include notes, bathroom graffiti, teen magazines, autographs, and homework together.  In her study, Finders refers to social development as "how the self and relationships are constructed and reconstructed through friendship, family, school networks, and the role of literacy" (p. viii).  Finders (1996) further analyzes these relationships with larger patterns of culture and power.  In this study, Megan socially constructs herself through these same intersecting areas of friendship, family, school, literacy.  Literacy for Megan includes teen magazines, autographs, notes, poetry, books, screenplays, music, and video texts (i.e., television, film, video).  Similar to Finder's research findings, words and phrases from these texts are merged with Megan's ways of expressing and vocalizing self.  Finders (1996) argues:

When one observes how readily these girls appropriate the words, experiences, and images of the magazines as their own, one can hardly deny the impact of these texts on the social construction of self.  These teens accepted such images as a ruler by which adolescent girls measure their own successes as they try on more adult roles . . . . These messages read over and over became scripts for the girls. 
(p. 65)
Christian-Smith (1993) stresses that literacy is a social practice, which is performed in relation to the institutions of home, family, school, and peer subculture.  Therefore, when a novel is read, it is rewritten in the young reader's mind to interconnect with other socio-cultural factors of life such as sexuality, gender, race, ethnicity, class, and work (p. xiii).  These socio-cultural factors combine to form different cultural identities.  Christian-Smith questions to what degree romance novels shape young women's identities.  Typically, the romance novel involves women having Problems with identity and economic destinies, which can only be resolved through the intervention of a male character (p. xi). The popularity of romance novels is because they explore dilemmas young women face today.  They use desire and fantasy as "a means of dealing with emotions, working out conflicts and life solutions to difficult problems.  Through fantasy, one can imagine other worlds where secret hopes and dreams come true" (p. 7).  Romance novels share something in common with video texts (e.g., soap operas) in that they lodge feminine identity in narratives that require waiting for and getting a man in order for the woman to be a whole person.  Romance novels and video texts are "actual means for rationalizing, constructing and anticipating one's life destiny: romance, marriage, children" (p. xi).

Gendered forms of text from popular music, screenplays, Shakespearean plays, and other literacy are used by Megan to express herself.  The form of text used is important from a socio-cultural perspective.  The different forms of literacy in this study allow for a more context-specific interpretation of the research, which is characteristic of feminist attitudes toward theory, theory production, and interpretation.  I have made a deliberate attempt at avoiding the imposition of a prior or "outside" theory on Megan as a participant.  Rather, meaning and themes surface from the socio-cultural understandings of her realities.

Much feminist
literature provides a
critical edge that
makes it possible to
question who is
excluded from the
process of creating
knowledge and from
the representation of
knowledge in
standards, norms, or
truths.
(Gregory, 1996; 
Kriby & McKenna,
1989)


Young women's
expericnces and
concerns need to be
validated by
including them in
research theory and
approach.

Literacy includes teen
magazines,
autographs, notes,
peotry, books,
screenplays, music,
and video texts.

Literacy plays a role
in the social
development of girls
as words and phrases
from these texts are
merged with young
womens' ways of
expressing and
vocalizing self.

When a novel is read,
it is rewritten in the
young reader's mind
to interconnect with
other socio-cultural
factors of life such as
sexuality, gender,
race, ethnicity, class,
and work.

(Christian-Smith,
1993)


Romance novels and
video texts can create
a world of fantasy, in
which one can
imagine all their
hopes and dreams
come true.

"When we seek to
understand learners,
we must seek to
understand the
cultural contexts
within which they
have developed,
learned to interpret
who they are in
relation to others,
and learned how to
process, interpret, or
decode, their world."

(Purcell-Gates, 1999,
p.5)


Table of Contents


Race, Identity, and Difference
Recent literature related to First Nations/Métis voices takes the form of resistance to colonization in education by refusing to accept subordinate status assigned by the oppressor.  From this perspective, viewing "difference" is a strength (instead of something lacking) from which to construct a positive identity of one's own making (Rymer & Alladin, 1996; Hampton, 1995; MacIvor, 1995; Stairs, 1995; Taylor, 1995).   Literature on Aboriginal issues also queries cultural representation, which crosses the disciplines of education, art history, history, and archeology.  An analysis of cultural representation includes questioning who has the power to define what is the "norm" and to create false hierarchies of superiority that promote objectified views of "others", who may be different from the norm being set (Sleeter & Grant, 1996; Banks, 1998; Hubbard, 1994; Francis, 1992; McMaster & Martin, 1992; James, 1989; Schwartz, 1981; Thomas, 1981).  This literature exposes ways that the oppressor has tried to silence and subordinate Aboriginal people.  In addition to discussing the need for Aboriginal people to speak out and self-represent, the literature identifies systemic discrimination in its many forms.

In relation to empowerment, there is a growing trend for the literature to question positions of privilege and power using a critical examination of concepts of race and whiteness, and through social construction of identities and difference. The participant in this research summary, Megan, does not directly address concepts of race and whiteness.  However, ideas connected with the social construction of difference and identity relate to the oppression of people with disabilities.

According to Maori researcher Russell Bishop (1994; 1995; 1996), one way to hear voices of people not previously given a form for self-expression is through narrative research.  The balance of power shifts from researcher to participant throughout the research process in a form of reciprocal dialogue.  For example, rather than the researcher providing structured interview questions that direct the participant as to what will be discussed, the researcher has an open conversation with the participant.  The participant has some control over the direction of the conversation in order for them to share subjects of meaning to them.   Bishop explains this narrative process as showing value and respect for the participant's experiences and knowledge by allowing themes to develop from the participant's own cultural understandings.  In narrative research, there is no need to validate an existing theory or override the participant's voice with the researcher's (Graveline, 1996; Monture-Angus, 1995; bel hooks, 1990; Mishler, 1996).  Through the narratives, this form of research expects that people will be moved beyond the text into action (Mishler, 1996).

A growing body of narrative research directly relates to Aboriginal women on an array of issues such as the teachings of a Cree mother through stories (Bighead, 1996), the special dialogue of Miqmaq women (Battiste, 1989), life stories (Blackman, 1992; Cruikshank, 1990), a three generational study of First Nations women surviving racism (Gardippi, 1998), narratives about grandmothers (Hungry Wolf, 1980), Aboriginal traditions in academie (Graveline, 1996), and collective narratives of Métis women (Legare, 1996; Poelzer & Poelzer, 1986).  This research uses narrative research as well.  However, it is unique in that it presents a collaboration and co-editorship with one First Nations woman who is also a youth.  Further, the participant tells stories about her experiences in urban schools and life as a youth today.

"Difference" is a
strength rather than
something lacking.
 

Who has the power to
define what is the
"norm"?
 

In narrative research
the balance of power
shifts from researcher
to participant
throughout the
research process in a
form of a reciprocal
dialogue.
 

Themes develop from
the particpant's own
cultural
understandings, and
existing theories do
not override the
participant's voice
with the researcher's.

(Russel Bishop, 1996,
1995, 1994)
Status First Nations
peoples with
disabilities are
denied access both to
service agencies for
disabled people and
to provincial
rehabilitation
resources.
(Demans, 1993)


Table of Contents


Aboriginal Peoples in Canada and Disability
Status First Nations peoples with disabilities are denied access both to service agencies for disabled people and to provincial rehabilitation resources because of jurisdictional problems that view status First Nations peoples as a federal government responsibility (Demas, 1993).  Federal government policy about First Nations peoples with special needs lacks clarity in both the health and education areas.  Many reserves are not able to accommodate people with disabilities, which forces Aboriginal people with disabilities to move away from cultural family ties and to urban centers.  Demas adds that if you are an Aboriginal woman with a disability, then the likelihood of living in poverty is even greater than if you are a non-Aboriginal woman with a disability.  Furthermore, women's organizations such as the Disabled Women's Network (DAWN) need to consider the needs of Aboriginal women by providing programs with cultural awareness.  Concerns expressed by Demas (1993) are reiterated in one Masters of Social Work thesis written by Sharon Wall entitled Disability and well-being? The story of an Aboriginal woman (2000). Wall's thesis provides a glimpse into the life of a 47 year old woman who was diagnosed being quadriplegic after an accident. Research in the area of Aboriginal people with disabilities is very important because the needs of Canadian people in this area are significantly greater than the norm, response to these needs appears to be limited, and academic research to draw attention to and understand the area is relatively non-existent.

There is little mention of Aboriginal people in the report In Unison: A Canadian Approach to Disability Issues (Federal/Provincial/Territorial Working Group on Disability Issues, 1997) except for a 1991 statistic indicating that 16% of Canadians (4.2 million out of a total population of 30 million) reported a disability and 30% of Aboriginal people in Canada reported a disability.  The In Unison document "sets out a vision and long-term policy directions which promote greater equality for and inclusion of person's with disabilities" (p. 1).  A commitment is made to work toward full citizenship of people with disabilities in Canadian society, and to remove barriers and systemic discrimination.

The absence of any discussion about issues for Aboriginal people with disabilities in the In Unison document occurs despite years of advocacy on behalf of and by people with disabilities as described by the Canadian Broadcasting Corporation [CBC] (1991), Disability Network series "Natives and Disability", which interviews Aboriginal people from several First Nations communities across Canada (e.g., Mohawk, Cree, Blackfoot, Haida) who either have a disability or live with someone who has a disability.  These interviews expose various levels of governments for their failure to provide Aboriginal people with disabilities adequate income, educational support, accessibility, housing, employment, rehabilitation, health care, and transportation especially when living on a reserve.

One of the First Nations people interviewed in "Natives and Disability" (CBC, 1991) is the controversial political cartoonist and humorist Everett Soop.  Soop is Blackfoot and lived on the Blood Reserve in Southern Alberta.  He is the only Aboriginal artist to have his work included in the permanent collection of the National Archives of Canada's Museum of Caricatures, and he is noted as saying on CBC (1991),

I began to see what I could do; that my disability was not important.  That it was my life that was more important . . . . now, my disability of having muscular dystrophy, diabetes, and being hard of hearing are not as bad as the other disabilities I have and that is being an Indian, unemployed, and being a Canadian . . . . The problem is I really doubt anything will be done because previous experience has told me both as a disabled person and as an Indian all we've ever received is promises.
The issue of "voice" is directly addressed by Soop in "Soop on Wheels" (Greer & Hutton, 1999) as he discusses the need for Aboriginal people with disabilities to speak out about injustices on and off the reserve.  Soop himself experienced ostracism from his own Aboriginal community for his outspokenness about communities (both non-Aboriginal and Aboriginal) treating individuals with disabilities as if they were not human and then marginalizing "truth-tellers" about the situation.  Soop and his work can be viewed in his book I See My Tribe is Still Behind Me! (Soop, 1990) and more recently in the magazine Aboriginal Voices, "Reflections in the Life and Times" (October 1999).

Other Aboriginal people who have spoken out about disability issues include Donna Goodwater, from Okanagee, who tells her story of fighting for the human dignity of her daughter on the reserve in "Little Mountain" (The National Aboriginal Network on Disability [NAND], 1993).  As a person who needs services for her child, Goodwater did not see them met by the bureaucracy she faced from provincial and federal governments and even her own Tribal Band Council and Chief who "closed their eyes" to people with disabilities.  When her daughter gets sick, she has to go to the band office.  The band nurse fills out forms that are sent to Vancouver for approval.  It takes anywhere from one week to six months or even a year, in some cases, for the medical request to be approved.  There is no time frame or guarantee for when the services will be given.  In the case of trying to get a suction device to drain the mucous from her daughter (she wasn't strong enough to cough it up by herself), Goodwater said it took over seven days for a form to be processed.  In the meantime, her daughter was in pain.  Goodwater's advice is for the disability community to,

get stronger than themselves and to a place where they can voice their opinions and be assertive.  If you aren't, you are not going to get the services.  You don't get anywhere by asking. 
(NAND, 1993)
Over the past few years, grassroots organizations of Aboriginal people with disabilities have just begun to form and strive for public policy reform, unlike non-Aboriginal disability groups who have been organized since the early 1970s (ARGDI, p. 2).  With the exception of the Gary Tinker Federation, there are few organizations represented by Aboriginal people with disabilities, and it is difficult to access information about where to go for disability services and funding.  Funding cuts appear to have gradually eroded the Saskatchewan First Nations Network on Disabilities [SFNND] and the National Aboriginal Clearing/Connecting House on Disability.  When the Clearing/Connecting House opened in 1998, Ethel Blondin-Andrew, Secretary of State for Youth and Children, announced at the grand opening that, "The Clearing House will help to ensure that disabled Aboriginal people are provided with access to information they need to participate more fully in their work place, communities and the mainstream of our society" (Clearing House, 1998, p. 1).

Although the Clearing/Connecting House is still in existence, its operating power has now been severely cut and its future looks questionable.  The level of support given to Aboriginal disability groups has a huge impact on many areas of society, including the field of education.  In a study that included Aboriginal people living on and off reserve, Aboriginal youth (aged 15 to 24) had a disability rate of 21.7% compared to that of non-Aboriginal youth at 7.0% (Aboriginal Reference Group on Disability Issues -ARGDI, 1998).

In terms of genetic disabilities, there is little difference between Aboriginal and non-Aboriginal people.  The increased rate of disabilities among Aboriginal peoples is explained by the Royal Commission on Aboriginal Peoples, Gathering Strength, Volume 3:

The disparity between Aboriginal and non-Aboriginal rates of disability corresponds to disparities in rates of injury, accident, violence, self-destructive or suicidal behaviour and illness (such as diabetes) that can result in permanent impairment.
(RCAP, 1996, p. 148)
The high rate of disabilities among Aboriginal peoples can also be  related to environmental and socio-economic factors (Durst & Morin, 1998).
Federal government
policy about First
Nations peoples with
special needs lacks
clarity in both the
health and education
areas.

Many reserves are
not able to
accomodate people
with disabilities,
which forces
Aboriginal people
with disabilities to
move away from
cultural family ties
and to urban centers.

If you are an
Aboriginal woman
with a disability, then
the likelihood of
living in poverty is
even greater than if
you are a non-
Aboriginal woman.

(Wall, 2000;
Deman, 1993)


Federal, provincial,
and territorial
disability reports
have neglected to
address issues for
Aboribinal people
with disabilities (e.g.
In Unison: A
Canadian Approach
to Disability Issues,
1997).

Various levels of
government fail to
provide Aboriginal
people with
disabilities adequate
income, educational
support, accessibility,
housing, employment,
rehabilitation, health
care, and
transportation,
especially when
living on a reserve.

"My disability of
having muscular
dystrophy, diabetes,
and being hard of
hearing are not as
bad as the other
disabilities I have
and that is being an
Indian, unemployed,
and being a
Canadian."

(Everett Soop, 1991)


"If you have a sick
child with a
disability, instead of
everybody trying to
help you get services,
everybody is pushing
you to institutionalize
the child" and
"hiding services" by
not providing
information on what
health services are
available or
financially covered."

(Donna Goodwater,
1993)


It takes anywhere
from one week to
even a year, in some
cases, for medical
requests to be
processed by band,
provincial, and
federal governments.

Aboriginal people
with disabilities have
just begun to form
and strive for public
policy reform, unlike
non-Aboriginal
disability groups who
have been organized
since the 1970s.

(ARGDI, 1998)


In a study that
included Aboriginal
people living on and
off reserve,
Aboriginal youth
(aged 15 to 24) had a
disability rate of
21.7% compared to
that of non-
Aboriginal youth at
7.0%

(ARGDI, 1998)


Table of Contents


Voice of Disability Literature and Youth
Some research about physical disabilities in special education carries  "basic assumptions of social and medical research [that] are rooted in . . . the 'expert' knowing what is best for others" (Woodill, Willi & CILT, 1992, p. 49).  Research constructed on this assumption can keep people with disabilities relatively silent and powerless in life.  When professionals assign labels to people with disabilities a personís self-concept can be damaged.  In some cases, people may feel relief to be able to call "it" or the difficulty being experienced as something, or to replace a label of "dumb" or "lazy" with a scientific label.  "Labels of choice" may even be deemed necessary by the person with the disability in order to take advantage of a system that continues to use labels for the purpose of administering financial assistance or providing job opportunities.  However, not many people are able to choose their own label because agencies, governments, and researchers do the naming.  This study does not expand further on a discussion of labels; however, the study does address issues of power over and power with people with disabilities.

A recent report for the special education of students with diverse needs6 has been developed by the Special Education Review Committee.  The committee's research included the voices of people involved with students having diverse needs through public consultations, meetings, focus groups, forums, interviews, and school visits.  The major recommendations that came out of the Committee's report are to:

  • Adopt, implement, and support the philosophy of inclusive schools,
  • Establish a Children's Services Advisory Committee to plan and support a provincial children's diversity strategy,
  • Renew the provincial policy and board of education policies as they relate to students with diverse needs,
  • Develop a framework of effective practices to support students with diverse needs, and
  • Enhance funding and develop protocols to focus on children's needs, accelerate the interagency initiative, and restructure consultative services. 
  • (p.vii) 
Some research on disabilities in fields of sociology, history, and anthropology indicate that the voices of people with disabilities are largely found outside the "professional" disciplines (Ferguson, Ferguson & Taylor, 1992).  Accessible literature for the general public such as If Sara Will Take Me (Bouchard, 1997) conveys a beautiful text expression and illustration of what it feels like to have a physical disability from the point of view of a man medically diagnosed as a paraplegic.  The book captures the spirit of the person in love with life.  Ruth Webb's autobiography Journey into Personhood (1994) celebrates her determination and ambition to reach her goals with cerebral palsy.  Balter and Katz (1991) share the story of a woman who is mentally challenged.  Helen Keller's classic The Story of My Life (1954/1905) also serves as a first person disclosure of learning to accept oneself and finding strategies to adapt to mainstream life.  These books provide strong, positive portrayals of people with disabilities that can inspire abled and disabled people alike.  Books such as these erase negative stereotypes projected in mass media and popular culture (Zola, 1992; Kent, 1988; Kriegel, 1987; Biklen & Bailey, 1981).  However, more first-person accounts are needed from people with disabilities about their lives.

Some academic texts directly discuss issues of voice and disability.  Skinner, Bailey, Correa and Rodriquez (1999) conducted a study with 150 Latino mothers of young children diagnosed with developmental disabilities.  The purpose of the research was to validate narratives (or story telling) as a viable way of learning more about disability issues; and to show how the narrative form of making meaning of self in relationship to disability draws on cultural backgrounds.  There are differences between how institutions and individuals create meanings about disability (Skinner et al., 1999; Gregory, 1998; Taylor & Bogdan, 1984).   In the case of Skinner et al.'s study, the majority of mothers of children with disabilities expressed positive perceptions of self in relation to their children and enriched lives because of their children with disabilities.  These results can be sharply contrasted with negative or deficient type of descriptions often coming from institutional meanings of disabilities. In Interpreting Disability: A Qualitative Reader (Ferguson, Ferguson & Taylor, 1992) the researchers present stories about research in a story-telling format to allow the participants an opportunity to express their realities.  However, there is little mention of youth with disabilities in their work.  Similarly, Abery and Stancliffe (1996), Gadacz (1994), Glim (1996), Bockstrel (1995), Miller (1994), Schwier (1990) all discuss disability issues from an adult perspective, with only few instances of people relating their experiences in the first person.  Glimís thesis The Lived Experience of Chron's Disease (1996) presents the views of five women with Chronís disease (1996).  Schwierís books Couples with Intellectual Disabilities Talk about Living and Loving (1994) and Speakeasy: People with Mental Handicaps Talk About Their Lives in Institutions (1990) offer accounts of experiences by people who are mentally challenged.  Orlansky and Heward (1981) in Voices: Interviews with Handicapped People provide transcripts of interviews with people with a range of disabilities.  Millerís Nobodyís Perfect (1994) stands out as an example of how first-person narratives can be incorporated with images, theory, and analysis. Nobodyís Perfect is like a self-help book with real "moms" sharing their experiences and feelings about their children with disabilities.

In rare cases where texts present the voices of youth with disabilities, it usually occurs in collaboration with the voices of older people as with Schwier's (1990) stories from people who are mentally challenged talking about their lives in institutions, Campling's (1981) stories from women with disabilities, and Orlansky and Hewards' (1981) interviews with adults.  Qualitative accounts of the subjective experiences of young people with disabilities remain minimal.

The voices of some young women with disabilities are presented in storybooks such as Yates' Nobody Knows! (1994), which is the story of a girl who has cerebral palsy and needs people to try and understand her speech; and Sanford's Yes I Can! (1992), which tells the story of a girl with cerebral palsy who decides she wants to become a model.  Voices of young women with disabilities can also be found in poetry, novels, and juvenile literature (Helfman, 1993; Gould, 1992).  This literature develops the two characteristic themes: (1) of how having a disability can be frustrating at times, even though there are moments of great accomplishments; and (2) how attitudes toward people with disabilities are often a major barrier for people with disabilities.  These themes also occur in a memorable television broadcast with Sondra Diamond speaking about her cerebral palsy on Man Alive (Gerber, 1975).

In Self-Determination Across the Life Span: Independence and Choice for People with Disabilities (Powers, Wilson, Matuszewski, Phillips, Rein, Schumacher & Gensert, 1996) it states that youth with disabilities are at a greater risk for dropping out of school and remaining unemployed and dependent than students without disabilities (p. 258).  Part of the problem is articulated by Mary Connor (1999) who questions why there is an over-representation of linguistically and culturally diverse children in special education after forty years of this first being raised.  Connor (1999) states there is still a "gap between what [linguistically and culturally diverse] students need and what educators know about addressing those needs" (p. 6).  Powers et al. say these problems are directly related to our education system:

Traditionally, education, and special education in particular, has not emphasized youth empowerment or partnership.  Instead, most efforts have focused on exposing youth to curricula and programs considered essential by professionals and families.  Youth have generally been involved as passive participants in this process.  Although most would agree that one of the overarching goals of education is to promote self-sufficiency and competency among youth, many or most of our own efforts to assist youth have been fairly directive, aimed at providing youth with informational and experiential building blocks upon which they might somehow spontaneously launch their lives after leaving school. 
(Powers et al., 1996, p. 258)
Voices of youth are needed in order for educators to increase the school retention rates by responding to youth with immediate and student-relevant education that incorporates students' interests.  In addition to increasing student retention, the voices of youth are needed to guide youth in decision making that is needed for success after graduating from high school.  If students are not given adequate opportunities to explore their own attitudes, interests, and decision-making power while they are in school, then schools are not adequately preparing students for the decision making and work required of them after they graduate.  Some graduates of high school seem lost as to how to get a job, what job to get, and how to set career goals (Wehmeyer & Agran, 1998).  All young people go through transitions from school to the workforce, however, young people with disabilities face many additional questions, barriers, and challenges (Saskatchewan Association for Community Living, 1999).

When you look at the special education field as a whole, Edgar (1997) expresses his belief that there needs to be a vision or a special narrative to help create change so that students with disabilities enjoy school more (p. 2).  This type of change to education has not come about from inclusion, whole language approaches, direct instruction, cooperative learning, cross-age peer tutoring, early intervention, wrap around services, or transition planning (p. 2).  Edgar (1997) suggests that changes to academic standards and the promotion of democracy in schools may make school more enjoyable if the changes are made with the desired outcome of youth with disabilities enjoying life more.  In a discussion of mentally challenged and developmentally disabled youth, Edgar (1997) surmised that one of the initiatives needed for youth with disabilities is the enculturation of disabled youth into taking social and political action.

Much research about
people with physical
disabilites carries
assumptions that only
the expert knows
what is best.  This
assumption keeps
people with
disabilities relatively
silent and powerless
in life.

Not many people are
able to choose their
own label because
agencies,
governments, and
researchers do the
naming.

Directions for
Diversity: Enhancing
Supports to Children
and Youth with
Diverse Needs (2002)
examined the
foundational and
philosophical basis,
program delivery,
integrated services,
funding,
accountability, early
screening and
identification,
professional
preparation and
expertise continuing
dialogue, and
parental invlovelment.
(p. vi)

Recommendation #57
That the
Saskatchewan
Government work
toward development
of a clear
understanding of
responsibility for
children with First
Nations status.

Voices of people with
disabilities are
largely found outside
the "professional"
disciplines.

Narratives draw on
cultural backgrounds
when looking at the
relationships between
self and disability.

(Skinner et al., 1999)


The majority of
mothers of children
with disabilities
expressed positive
preceptions of self in
relation to their
children and enriched
lives because of their
children with
disabilities.

The voices of young
women with
disabilities are
mainly found in
storybooks, peotry,
novels, and juvenile
literature.

(Helfman, 1993;
Gould, 1992)


Attitudes toward
peoples with
disabilites is often
the major barrier.

Youth with
disabilities are at a
greater risk for
dropping out of
school and remaining
unemployed and
dependent than
students without
disabilities.

(Powers et al., 1996)


There is an over-
representation of
linguistically and
culturally divers
children in special
education after forty
years of this first
being raised and a
"gap between what
students need and
what educators know
about addressing
those needs".

(Connor, 1996, p.6)


Special education, in
particular, has not
emphasized youth
empowerment or
partnership...
Many or most of our
own efforts to assits
youth have been
fairly directive.

(Powers et al., 1996)


Young people with
disabilities often find
it harder to get a job,
get post-secondary
education, and
become involved in
the community.  After
leaving an organized
system of school
services, students
with disabilities face
additional questions,
barriers, and
challenges in pre-
paring for adult life.


Table of Contents


Chapter Three: Celebration of Life

Education and Knowledge
Traditionally, academia values formally derived knowledge and pursues one truth or way of understanding.  In contrast, several authors affirm that informal education is just as, if not more, important.  I am reminded of the words of Patricia Monture-Angus who writes, "the only true knowledge that I can have is that which is learned from what I have experienced.  For First Nations, the rule is that all knowledge is what we have learned about the self" (1995, p. 45).  Educators/researchers Louise Legare (1996) and Deanna Gardippi (1999, p. 77) also view this form of knowledge as that which sustains us.  Other researchers also believe that there is not one truth; rather, each of us carry what we believe to be true at a given time and each person's "truth" is just as valid as the next person's.  I provide a short discussion of truth here as a way of analyzing different ways of viewing research.

One way that I sought to ease the tension between different values about education and knowledge was to get Megan's participation in the analysis by having her reflect upon the literature related to her stories.   However, this posed an added challenge.  At university, inter-textuals are pulled from philosophers and theorists, whereas Megan pulls meaning from films, scripts, fiction novels, and pop music.

I ask her to explain the context of her words.  Megan's favorite saying to me is, "I could tell you about it, but you really have to experience it yourself."  Thanks Megan (slight sarcasm).  I go to the nearest Family Video to rent the movies that Megan refers to.  I try to keep up with the Top 10 hits on the music charts.  I telephone Megan again and ask, "What do you want people to know?"  To explain, here is an excerpt from Megan's screenplay by Matt Damon and Ben Afflect, "Goodwill Hunting:"7

(Scene:  Sean and Will sit in the bleachers in the mostly empty park.  They look out over a small pond, on which a group of schoolchildren on a field trip ride the famous swan boats).

SEAN:  So, if I asked you about art you could give me the skinny on every art book ever written on Michelangelo?

You know a lot about him I bet.  Life's work, criticisms, political aspirations.  But you couldn't tell me what it smells like in the Sistine Chapel.  You've never stood there and looked up at that beautiful ceiling . . . . If I asked you about war, you could refer me to a bevy of fictional and nonfictional material, but you've never been in one.  You've never held your best friend's head in your lap and watched him draw his last breath, looking to you for help . . . .

Do you think I would presume to know the first thing about who you are because I read Oliver Twist? . . . There's nothing you can tell me that I can't read somewhere else.  Unless we talk about your life.

(1997, pp. 71-72)
This research values Megan as a whole person who is capable of reflecting and analyzing her own stories about her life.  We participate together in discussing the interweaving issues raised and implications for further research under the titles Survival and Resilience, Freedom, "Every human has limits", "Don't get your underwear in a knot", and Peer Friendship.
What is life?  An
illusion, a shadow, a
story, And the
greatest good is little
enough: for all life
is a dream, and
dreams themselves
are only dreams.
Pedro Calderon
de la Barca
"Life is a Dream"


"the only true
knowledge that I can
have is that which is
learned from what I
have experienced.
For First Nations, the
rule is that all
knowledge is what we
have learned about
the self."

(Monture-Angus,
1995, p.45)


Do you think I would
presume to know the
first thing about who
you are because I
read Oliver Twist?
... There's nothing
you can tell me that I
can't read somewhere
else.  Unless we talk
about your life.

(Damon and Affleck,
1997)


The participant and
researcher together
reflect, analyze, and
discuss interweaving
issues raised from the
narratives and
implications for further
research.


Table of Contents


Survival and Resilience
Elementary school was a real nightmare for Megan.  At school, some teachers told Megan to just ignore the taunting and told her not to say anything to her victimizer.  This tactic only led to an increase in student harassment and further isolation from peers.  Turning off one's emotions is one way in which some people may handle abusive situations in school (Gardippi, 1999, 26).  Suicide and dropping out is another way.

Society's attitudes toward people with disabilities are the biggest problem and contributor to feeling trapped.  Many people seem to think that a physical disability automatically means a mental disability as evidenced by people constantly talking slowly and loudly in Megan's face.    Megan adamantly tells people to, "treat me like an ordinary human being, like I'm all there and I know things, then that is all I need to keep my sanity."

Survival means much more than staying physically alive.  What keeps Megan spiritually alive are hopes, dreams, and "wishing upon a star".  These survival strategies are lived out through drama education.  Drama education courses have played a significant part in filling Megan with hope, helping her define who she is, and encouraging Megan to reach for her dreams.

Drama education has provided Megan with a real interest in going to school and not to become another statistic.  Drama is an avenue that encouraged Megan to speak up and express her feelings.  Participation in drama either directly or indirectly (i.e., acting, writing plays, watching films) makes Megan happy that, "It is a good thing I survived elementary school.  High school was much better."  Megan compares her survival to what Sandra Bullock says in the film "Hope Floats:"8

Childhood is something we spend the rest of our life trying to overcome.  What you have to do is take that hope you have as a child and let it float up into middle life.  It's not the beginning or end that counts.  The most important part is the middle.  So you have to let that hope rise up to you in middle age so you can do something about it.
Educational research identifies many benefits of drama including:  learning by doing, multi-dimensional learning (i.e., emotional, kinesthetic, sensory, logical, personal), developing empathy, and developing cooperative learning and confidence in oneself as a decision-maker (Cranston, 1991; Hornbrook, 1991; Heathcote, 1996).  Drama education can offer more for someone with a disability.  In Remedial Drama  (Jennings, 1973, vi) drama is presented as a form of therapy or healing for students who experience physical or mental difficulties.  It states drama can, "enable the individual to find, for himself, his own goodness, the worth of his own body and the ways in which he can express himself positively."  Again, this benefit could affect people with disabilities as much as people without disabilities.  In Kaleidoscope: International Magazine of Literature, Fine Arts, and Disability (Perusek & Akron, 1998), drama is something for everyone to enjoy.  However, for people with disabilities who do not have as many avenues to express themselves as able-bodied people, dramatic expression can help to compensate and provide an added social dimension.

Megan reflects that when you are acting, you get to do and say things that you normally might not do.  People are forced to see you in a different way when you are acting.  While at other times, you may identify with a character's emotions, but actually acting the part encourages you to express yourself through that character.  Drama often brings an audience's emotions to the surface, offering the possibility of influencing people's attitudes either consciously or unconsciously.  Megan likes using drama as an opportunity to break down stereotypes.  While the fact that Hollywood has created stereotypes about people with disabilities through drama does bother Megan, films like "What's Eating Gilbert Grape" and "Rain Man" offer hope that social change can occur through watching such films.

Megan looks for things and people she loves in life to get over times when she thinks, "You never asked this to be put on you, and you wonder why it is."  A relationship with unconditional love is what Megan thinks of when she speaks of survival:

Rose in the "Titantic" knows she can't go on living the way she is now.  I found it meaningful because you have to be the one to make the decision to save yourself.  When Jack and Rose are waiting for help in the ocean, Jack says, 'you must promise me that you'll survive and that you won't give up no matter what happens, no matter how hopeless.  Promise me now Rose and never let go of that promise.'  Rose, 'I promise.'
Megan says, unconditional love helps a person survive, "You can never say, I love you enough.  I don't think that is in the academic literature."
"School was a real
nightmare for me in
elementary.  My self-
esteem was really low
at school.  Kids
teased me
unmercifully, put
their toes under my
chair, cut my clothes,
and even cut my hair.
The teacher said
there was nothing
that he could do
unless someone got
hurt physically."

In Megan's situation,
she states that the
abuse she received in
school was related to
racism in the eighth
grade, but in general
"my disability is what
really got them going.
It wasn't so much
because of my racial
background."

Some educators may
contribute to student
harassment by not
saying anything when
a student ridicules
another student.

Many people seem to
think that a physical
disability
automatically means
a mental disability.

"treat me like an
ordinary human
being, like I'm all
there and I know
things, then that is all
I need to keep my
sanity."

Drama education
provided Megan with
a real interest in
going to school and
hanging onto her
dreams.

"Hold fast to dreams,
For when dreams go,
Life is a barren field
Frozen with snow."

"Dreams" by
Langston Hughes,
The Dreamkeeper,
1932.


Drama education has
many benefits.
However, drama is
especially beneficial
to students with
disabilities, who do
not have as many
avenues to express
themselves as able-
bodied people,
because drama helps
to provide an added
social dimension.

"unconditional love
helps a person
survive"


Table of Contents


Freedom
Historically, much discussion about students with disabilities has been about location or where to educate "these" students.  Today, there is a less talk about places of containment (segregated versus integrated school, resource room in a regular school, or resource teacher visiting the regular classroom) and more talk about inclusion where all students have the right to belong in the same classroom.  For Megan, location is still an issue as it plays a role in how free she feels.  In a segregated setting with people who have disabilities at Camp Easter Seal, Megan is free from able-bodied people's questions about her disability.  She is free to be seen as a person first before the disability.  Segregated settings can take a lot of that negative thinking off your shoulders and just let you be yourself without always having to use energy to deal with or teach ignorant people.  A segregated setting also can mean freedom from being judged, freedom to move around a better accessible environment, and freedom to call on a number of different people for bathroom assistance when it is needed, and freedom from parents for a week.  But Camp Easter Seal is not perfect.  You are not free to go party with the camp counselors after 10 p.m.

In an integrated setting with able-bodied people at school, Megan experiences more stress because the students and teachers focus on the disability more.  People are constantly reminding you in many different ways that you cannot do things, just because they lack the imagination for how you can do them. For example, in Megan's entire school career she was only included in one field trip with her classmates.  This inclusion occurred because the teachers wanted her along and planned to accommodate her special needs.  In all Megan's other school years, teachers immediately gave reasons why Megan could not attend with her classmates.  Additional restrictions to an integrated school setting include:  you are not free to pick your own bathroom time; not free to state "helping" preferences to your T.A. because school boards draw up job descriptions with your T.A. instead of you; and not free to skip classes, because the T.A. is following you around all the time.  Despite the restrictions on freedom, Megan wanted the freedom of choice to attend an integrated school setting.  This is reflective of Megan's desire to control her own life and integrate as fully as possible with the rest of society.  She understands her own experiences, needs, and interests better than anyone else.  She should be allowed to make the decisions concerning herself. 

Freedom in any school can be achieved through drama education where you learn with your brain, body, and heart.  The subject itself offers a freeing experience, and the absence of your T.A. for a short time gives you a break.  Only you can express yourself in a character and very little writing assistance is required from a T.A.   In drama, you are free to play characters that anybody else could play; any walking human being could play them.  Megan says, "I think for me that was real therapy . . . because I knew that this was a place where my disability did not exist unless we were actually to write it into the scenes and script."

Segregated settings
can provide a high
degree of freedom
from questions about
your disability,
negative comments,
judgements about
what you can and
cannot do, and
physical barriers to
participation.

Integrated settings
have been more
stressful for Megan
because able-bodied
people constantly
remind her of what
THEY THINK she
cannot do, just
because they lack the
imagination for doing
things a different
way.

Despite restrictions
on freedom, Megan
wanted the freedom
of choice to attend an
integrated school
setting.

Freedom in an
integrated setting has
been achieved
through drama.


Table of Contents


"Every human has limits"
Megan wants people to recognize that "every human has limits", but to ask and listen to what she wants, instead of forcing their version of "help" on her.  Megan is committed to influencing attitudinal change in educators.    Megan has been a guest speaker in an anti-racism/discrimination course that I have been teaching for two years.  The course is mandatory for teachers to pass before they can receive their Bachelor of Education degree.  Part of the course directly discusses disability issues through a series of hypothetical teaching situations.  Both Megan and I have been disheartened to hear future teacher responses to situations with people who have disabilities.  There is a lot of pity, a paternalistic "I'll take care of you" attitude, and rarely a view of asking the student with the disability what they would like.

When I asked student teachers what they would do if they saw someone in a wheelchair approach a door when they were nearby, 99% said that they would go and hold it open for the person.  Megan's response is, "Good for you.  We all know you can open doors quickly.  Pat yourself on the back.  Maybe I cannot do it like you, but I can still open it."  1% of future teachers gave the desired answer that they would wait for the person to open the door themselves, and if the person with the disability looked like they could not manage, then an offer would be made to open the door.  This latter response shows greater respect for and understanding of the need to be independent.

When I asked teachers in training what they would do if their class was going on a field trip and one of their students used a wheelchair, 95% found reasons for why the student in a wheelchair should not go on the outing with their peers.  Reasons for leaving a student in a wheelchair behind ranged from, "Obviously she cannot go", "It's her parents' responsibility to take her", "That's asking too much of a teacher", "Give her some work to do in the library when we're gone", "I'd be concerned about safety issues.  How am I going to get her out of a place if there is a fire."  Only 5% of future teachers considered different possibilities For taking one of their students in a wheelchair along on a field trip.  Those responses included: "Arrange for a wheelchair accessible bus", "Talk to her parents to take her", "Maybe we can rent portable ramps".  Not one teacher out of 300 suggested that they could assist in a two-person lift to put their student on a regular bus.

Megan suggests that teacher training needs to include more special education role play exercises for teachers to develop greater empathy and to learn practical ways for inclusion beyond the theories.  The lack of teachers' understanding has resulted in actions and words that have taken a toll on Megan's self-esteem and educational success.

Full participation in physical education is a big concern, because many children with physical disabilities are left out of sports, even though they need to be active, too.  Some teachers will use a student in a wheelchair as a pilon as a form of inclusion instead of imagining more active participation.  Most of the time, Megan went to a corner of the gym to do stretching exercises while she watched the rest of her classmates do the lesson.  Megan only had one teacher in all her years of education that included her in a sport activity: badminton.  Students who have physical impairments need exercise, physical movement, and instruction in healthy living.  Yet, many teachers do not know how or what inclusion looks like for students who use a wheelchair and more workshops and courses in education need to provide demonstrations of what to do in good educational practice.

On the other end of the spectrum, many teachers do not seem to understand physical limitations or bodily needs of some students with cerebral palsy.  Some students with physical disabilities require more time to go to the bathroom in order for a caregiver to move the arm and foot rests out of the way, lift you out of your wheelchair, place you on and off, and then fasten you back into the chair.  It takes extra time to get from point A to B when negotiating space between people not looking below, travelling through narrow turns, and climbing slopes not designed with wheelchairs in mind.  Megan constantly had to deal with teachers admonishing her for her tardiness or questioning her in the hallway before she was allowed to enter class late.

One solution that educators have offered Megan to avoid lateness, or falling behind in copying notes is for her to go to the bathroom or continue working during recess.  Megan says that educators do not recognize the need for her to socialize at school.  She does not get many opportunities for socializing outside of school, because of the access restrictions of social places and the need for having someone nearby for bathroom assistance.  Recess time or spares mean so much to a person needing that social development.

One subject area that has taken up a lot of Megan's social time with remedial work is math.  At a recent teachers' conference, a debate occurred over why some students have difficulty with math.  There were educators who believed that some students' brains are just not programmed for learning math, regardless of what method is used.  Other educators felt that learning math is related to the natural developmental stages of the student.  Recent research suggests that math students often are not given an opportunity to work together in groups and have colloquiums that have been successful in teaching women in science (Glanfield & Mgombelo, 2000).  Other research states that cultural differences have not been considered in the teaching of math and science in particular (Aikenhead, 1998).

Regardless of the reason why some students have difficulty learning math, Megan did not get the added math tutoring that she had hoped from her T.A.  In fact, aside from the bathroom assistance, Megan did not find her T.A. helpful with her academic education.  There is a need to re-examine the role of T.A. and the type of training they receive to work with students who have disabilities.  In Megan's case, educators have given her more of the same work to practice at home.  All that was provided was more of the same work that was not understood.  It was also suggested that Megan obtain a tutor; however, that suggestion did not consider the affordability of tutoring.  Difficulties in math became so overwhelming that all of Megan's energy and time went into working at something that she did not enjoy.  The subjects that she did enjoy did not get as much time.  As a result, Megan's grades began to slip in all subject areas and her enjoyment of school decreased considerably.

Another area for consideration is course programs for students with disabilities.  Megan's guidance counselor and teachers made recommendations for Megan's coursework based on assumptions that if Megan was weak in one subject area (i.e., math - 53%), then she must be weak in a related subject area (i.e., science - 94%).  Although there was a 41% difference in grades, Megan was put into a general science class.  The message to Megan was that even good work would not be rewarded.  The following year, Megan's performance in science met teacher's expectations that you could not excel in science if you were not good at math.  Her new science grade was 60% and her new math grade was 53%.  Megan no longer enjoyed science the way it was taught in the slow learner program.  Instead, Megan wishes teachers would have looked at what was working for her in the regular science classes and found a way to apply those things (i.e., colloquiums) to her math instruction.

With student teachers
there is a lot of pity, a
paternalistic "I'll take
care of you" attitude,
and rarely a view of
asking the student
with the disability
what they would like.
 
 
 
 
 
 
 
 
 
 
 

95% of student
teachers find reasons
why a student in a
wheelchair should
not be included.
 
 
 

Teacher training
needs to include more
special education
role play exercises
for teachers to learn
practical ways for
inclusion beyond the
theories.
 

Many children with
physical disabilities
are left out of active
participation in
sports, even though
they need to be
active, too.
 

Teachers do not seem
to know how or what
inclusion looks like in
practice for students
who use a
wheelchair.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

There is a need to re-
examine the role of
the teacher assistant
and the type of
training they receive.
 

A student can have a
disability and be
gifted at the same
time.  Course
programs need to
ensure students with
disabilities still get
enough stimulation in
subject areas they
enjoy.
 

The message Megan
received was that
even good work
would not be
rewarded.


Table of Contents


"Don't get your underwear in a knot"
Megan says that she has never internalized oppressive behaviors and comments made toward her with the exception of  "one very bad year".  Mostly, Megan accepts and feels good about who she is.  That does not mean life has been easy.  Many people Megan meets treat her as if she were "not all there".  Megan expends a lot of energy dealing with teachers' misunderstanding of her that could be spent on striving for personal goals.  Megan says that she has never felt as if she lost her First Nations identity by "conforming" to contemporary society or colonization.  She does not think about it much.  As she says, "I'm just not interested in powwows and traditional ways."  For Megan, her identity continues to become more clear to her through lived experiences and through sharing experiences socially as opposed to learning only from books.

Megan is a person who knows who she is and what she enjoys.  She has not set limits for herself by saying, "I can't do this or I can't do that because I am in a wheelchair".  Her youth gives her the explicit permission of dreaming of many possibilities for the future.  She holds on to optimism and the excitement of living in which "it could happen" in terms of anything you might wish for in life.  Megan says, "I think dreaming is good.  Men do it as much as women, perhaps of different things."

When Megan reflects upon what she needs in order to continue forming a positive identity, she considers different sides of herself in this paraphrase:  As a student, Megan needs educators to protect her physically and emotionally from abuse at school; she needs encouragement more than correction; needs to enjoy learning and feeling good about herself "It takes me a long time to admit to myself that yes, I have done something good."  As a teenager, just like any other teenager, Megan needs independence; inclusion with peers on class outings; time to socialize with friends at school; and freedom to try out nose rings, tattoos, and so on.  As a person with a disability, Megan needs independence even more from caregivers (e.g., T.A.); needs more encouragement with an "I can do it" attitude; needs school rules applied to her in the same way; and needs equitable opportunities to explore what she is good at and where she belongs, as reflected by Megan's mom,

Yes, she does have her days.  Yes, she does have her obstacles with her disability, but she can really pull herself together when it comes to [her disability].  When [Megan] has problems with her disability, she does not come to me unless she wants to.  I don't go to her if I think she has a problem.  Only she can fight her battles for herself.  I don't know what it is like to be her, so I can't really say [for her].
As a daughter, Megan says that it feels really good to go places on her own without her parents, "Mom and I get into arguments and fights about everyday stupid things.  You know, all kids have those arguments with their parents."  Yet, Megan and her mom share a very close bond and understanding because, "[mom] also helped me get the point across that I'm just as normal as someone else--treat her normally."  Despite the closeness, Megan explains that her mom does not automatically know everything about her, "There is a lot she doesn't know."  The important thing is that she is there for Megan if she needs her as Megan states,
If she sees me being treated unfairly, she'll give me an honest shot at trying to defend myself.  But if my defense mechanisms don't work, and she sees that I'm being treated unfairly, unjustly, and I need that support, then she's right there to give me help.  She's got more brains and more guts than any human being could ever have.  Basically, if you aren't careful, she can get bitchy (snickering. . . mom doesn't know I said that.)  I admit that I can get crotchety when people don't understand who I am.  If that person T's me off and says something I feel is wrong, I'll defend it in some way.  Whatever comes my way, I just go through it like a tornado.Megan needs people who she can identify with to give her hope.  Sometimes, role models are characters in a film, who accomplish things they want in life, like Rose in "Titanic" or singer Celine Dion.  Sometimes role models are teachers, who help her see how she can accomplish things in life.  Whatever life means to Megan, it means not dwelling on the negative and not giving up on your dreams.
How can academics be related to Megan in a way that is meaningful to her?  At the classroom level, it is reasonable for Megan to request that teachers provide their lectures notes so that she does not have to copy them.  The time Megan spends writing notes from the board and the frustration in keeping up with that activity has nothing to do with her learning the content of those notes.  Teachers also need to provide class notes in a manner that is not embarrassing to the student (i.e., in front of peers).  It is reasonable for Megan to request some negotiation in how much her T.A. accompanies her around the school, in particular, not to be escorted to the bathroom.  Granted, not all people with disabilities may be able to travel from the classroom to the bathroom on their own.  But it is not appropriate for an individual like Megan, who is able to make judgements for her own personal care, to be alienated from her peers for the sake of "the contract".  You cannot generalize across the diversity found in students with disabilities.  That is why there needs to be a clause within a care giver/educator's contract that allows for individualized accommodation.  School boards should meet the student with a disability and their guardian to negotiate a personalized holistic care program before arrangements are made for that student.  It is not just about the type of care provided, but also the interpretation of how that care will be carried out that is important.  At the high school level, there already exists an individualized program plan arranged between the student and guidance counselors.  This planning could be expanded upon to involve more than course selection and scheduling.  It could be an opportunity to address the social and other needs of the student.  That means the student would also have an opportunity to voice what would be equitable for him/her in whatever form of communication that is unique to him/her (e.g., Signed English, BLISS Board).
A lot of energy is
spent dealing with
teachers'
misunderstanding
that could be spent
striving for personal
goals.
 
 
 
 
 
 
 
 
 

What does Megan
think she needs?
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

How can academics
be related to Megan
in a way that is
meaningful to her?


Table of Contents


Peer Friendship
What are friends for, my mother asks. 
A duty undone, visit missed, 
casserole unbaked for sick Jane. 
Someone has just made her bitter. 
Nothing.  They are for nothing, friends, 
I think.  All they do in the end-- 
They touch you.  They fill you with music.9
(Rosellen Brown)
Research into the personal friendships of youth is scant.  In particular, there is little research into the friendships of female youth as "most studies of young people have focused on young men and the public evidence of teenage boys' all too often antisocial solidarity, ignoring whatever it is that young women, mostly in private, say and do" (Hey, 1997, p. ix).  Hey (1997) states that it is difficult to apply theories of "youth culture" to young women because these theories are often highly gendered accounts that profess to be universal, while carrying masculine presumptions about what is and is not considered serious research (p. 6).  Added to a gender bias in some research is the difficulty of doing research about the friendships between young women when youth often treasure the "secret" nature of friendship as reflected in Megan's comment, "You never tell your mother boy secrets!"  Frones (1995) agrees that the friendship of youth is a very special form of intimacy in which peers talk about things that they would never discuss with adults.

Yet, friendship among youth is important to research since "all sorts of studies show that friendship is a very important determinant of health and well being.  People who have friends are healthier, feel better and live longer than those who don't" (Hey, 1997, p.ix).  Peer socialization is important to youth identity also in terms of peer influences to conform or not to conform to the "in group" or in terms of reproducing images in popular culture (e.g., dress, make-up, hair, slang).  Wason-Ellam and Li (2000) also found that youths' identity formation is greatly determined by social acceptance of peer culture (p. 7).  Socializing with peers helps us decide who we are and where we belong:

The development of subjective identities is both complex and important, and identities themselves are multi-faceted and contradictory.  They are formed through a combination of available discourses, personal experience and material existence . . . . All the major binary opposites (white/black; heterosexual/homosexual; male/female; bourgeois/working class [able-bodied/disabled] etc.) rely on the construction of subjective identities on 'othering' those on the other side of the divide.  It is by drawing boundaries and placing others outside those boundaries that we establish our identities. 
(Epstein, 1993, p. 18)
From an educational perspective, socializing with peers also has the significance of teaching students communication skills needed in all aspects of social life after graduating, whether it be in relating to co-workers, serving on committees, participating in team sports, and so on because,
[S]chools are much more than a vehicle for narrow educational instruction; they also teach boys and girls how to become men and women in a sexist, classist and racist society . . . . But the sociology of schooling has persistently ignored the extent to which messages are also given about emotions and personal relations, those very dimensions of social life in which women are taught to specialize. 
(Hey, 1997, p. vii)
Despite the importance of friendship in the formation of female youth identity, Megan has made little mention of it .  The "girl talk" between Megan and myself throughout the research process constitutes generational friendship, but not peer friendship.   Megan's silence on this area of her life raises the question, "Why?"  Megan participated with me in this analysis of un-voiced things of importance starting with, "Well, I didn't have a lot of friends when I was in school."

An analysis of how girls place other girls on the margins of peer groups by virtue of being different suggests that girls' friendships are involved in "the production of certain forms of power and subjectivity.  These regimes of connection/(micro) technologies of power then become analyzable in historical and social terms" (Hey, 1997, p.23).   Megan considers Hey's theorizing:

There was a lot of that in Grade 6.  I was shut out of the group . . . . that's the way they were.  If you don't act like us, look like us, talk like us, dress like us, then you aren't one of us at all.  You don't belong here with us was the way they put it with me.
Megan's disqualification from friendship groups in school was related to difference whether it was because of race or disability.  As Megan's interviews indicate, the "in group" did not hang out with any people overweight, wearing thick glasses, being hard of hearing, or being on Social Assistance.  Even dressing in the same style of pant more than one day was enough to receive criticism and be reminded that you were not "one of us".  Other forms of power to include and exclude certain students from groups involved withholding invitations, refusing to gift exchange, putting their feet underneath Megan's chair so that it would tip, cutting her clothing, and chopping off her hair.  Megan adds, "On top of that, they would also call me demented.  They said that I should be institutionalized."

In Hey's (1997) study of school friendships, being 'one of the girls' was more important than anything, even if it meant cutting class to be with them.  Attendance at school was not taken seriously and school itself was considered boring such that students used "every opportunity to convert the inertness of school into a chance to do their friendship work" (p. 77).  Socializing was viewed as the most important part of school by students: "If you didn't participate in it, you were a snob" (p. 77).  Megan's constant shadowing by her T.A. ensured that Megan could not take part in socializing with her peers.

In reflecting back on elementary school, Megan wanted to befriend "those girls" who were part of the "in group" so much that she rejected the friendship of a guy who looked like a "dork" because, "If you were caught hanging out with a dork or even talking with one, people were banished from socializing with the 'in people'  in the class."

Despite the exclusionary tactics of peer groups, Megan still had the exclusivity of one very good friend in elementary school.  This friendship can be viewed as a form of individual power.  The two friends shared note writing as a form of defining their own friendship apart from other peers--to create their own power division in which "the personal was allowed its own space beneath the surface, as part of the 'unofficial' curriculum" (Hey, 1997, p. 77).  Such "invisible" communication activities are considered more than "bits of silliness".  Hey (1997) regards such activities as serious raw data.  During her study, note correspondence episodes resembled chain letters that lasted as long as a week and included more than 50 separate exchanges: "[T]hey were important means of transmitting the cultural values of friendship" (p. 50) .  Hey (1997) points out that in her study 90% of the notes between girls were typically about girl relations and only a few notes mentioned boyfriends.  Hey found that boys were never seen in note passing activity.

Although secret, writing exchanges occurred for Megan with two girls in school, this activity occurred differently for Megan because her disability hampers muscle coordination.  The act of writing takes longer for Megan and makes it more difficult to hide notes from the watchful eye of a teacher.  Megan says,

I'd come home from school and write them the night before.  I'd write a little bit here and a little bit there.  The fold was important because it was neat, cool, it was our own little thing. Tammy would send me stupid notes.  Kids are learning about sex younger and younger.  I'd say that's gross and kill myself laughing.  I wouldn't dare send a note like that.  I have to admit that I was a goody goody.  Because I had my T.A. on my back the whole time, it was really hard to do things.
Megan's friendship with Tammy changed when they went to different high schools.  Tammy made new friends; however, Tammy and Megan still retained what Nilan (1991) refers to as a moral order of friendship committed to caring, trust, and loyalty (p. 167).  Tammy spent many weekends at Megan's house, had sleep overs, and called Megan's mother her second mom.  I remember at graduation Megan's mom referred to Tammy as the friend who stuck with her through everything.  Megan says,
[Tammy] really empathized with certain things I went through. Sometimes she didn't understand and she would chuckle with the guys about things that I might have done [e.g., "Why can't Megan go outside for recess, she has enough padding on her?"]. At the time, they were just kidding around and they weren't saying things to be mean. But my feelings were hurt.  They couldn't always understand what hurt and what didn't.  Tammy would apologize to me afterwards.
Hey (1997) states that the desire to become best friends and the fear of being displaced by another significant other is very real for girls.  Many girls went from belonging to one's girlfriend to belonging to individual boys as part of their journey from girlhood to their status as (hetero) sexual girlfriends (p. 72).  Megan's analysis is,
 I kept my mouth shut when I liked guys my best friend liked.  When Tammy started dating, it wasn't that I hated her because she had a guy.  Good for her.  I'm not going to cry over her having a relationship. We may be best friends but we have different lives.  She never had a steady boyfriend (two months max and then it was over) from guy, to guy to guy.  She made it clear that she had other friends other than him and she did make time for her friends, but now she found this guy and I thought it was a two month thing but it is not.   I still know that she is my best friend and she is taking her life in a direction that doesn't always include me and the same with me.
Although Megan and her best friend did not attend the same high school, Fronz (1995) recognizes the best-friend phase as laying the foundations for deeper friendships later in life as "puberty opens the way to an understanding of the complex play of social relations, to new perspectives, and new experiences, and to a further deepening of the emotional and psychological dimensions of social relations" (p. 219).  Within the school environment, it was difficult for Megan to cultivate new close friendships.  Without realizing it, many educators contributed to Megan's exclusion from peer interactions, despite efforts toward philosophical and academic inclusion:
 In high school, I thought if they want to befriend me, then they will do it in their own way.  I know a girl who tries so hard to befriend people.  I told her . . . you've got to stop proving yourself to people. You're your own person.  You should not have to do things people [from the in group] tell you to do.  In high school I knew I had friends, maybe not close friends, but these weren't people who hated me either. . . I could think of other things to keep me occupied [besides being with friends].

Everybody knew who I was but they had their own groups.  It wasn't that the place was clique.  Everybody talked to me, but they wouldn't dare get close to me to get to know me or [go for coffee].   I didn't dare try to push my way into anybody else's turf. 

The ways in which educators created exclusionary divisions between Megan and her peers include: omitting Megan from class field trips, making her stay in at recess and lunch to copy notes, encouraging Christmas gift exchanges, not promoting respect and safe classroom management, close accompaniment from T.A. during peer socializing times, embarrassing Megan by meeting her at her classroom to go to the bathroom, refusing to include Megan in access discussions surrounding graduation, and having Megan go to the corner of the gym to do stretching exercises instead of having her participate with peers in physical education (to name a few).  Why is this important?
In high school it does make a big difference.  That is when I started resenting my T.A..  It wasn't anything she said personally.  The actions within her job were restricting and very very hard.  It is very hard, especially when you have a crush on a guy.  A lot of these kids [with disabilities] are very normal and they go through the same emotions that regular teenagers go through and want to do the same things even though it is wrong to have kids get away with ditching class and stuff, but the thing is I thought about it all the time.  Not once did I get to go [with my peers]. 
The right to socialize with peers at school is important for all students, including students with disabilities.  According to Fronz (1995), social relations with peers is more than a right; it is an essential need for identity development (p. 226).  Therefore, educators need to practice inclusion at its basic level of understanding, which does not rely on more funding or added personnel.  Otherwise, Megan tells us that students with disabilities leave school without having being taught what they need to know: 
Right now I'm finding it very difficult because I don't know what to say to guys, and dating, and starting relationships with people in general.  It doesn't even have to be the opposite sex.
There have been people who suggested that Megan make friends with someone who has a physical disability--like her.  This is a broad and incorrect assumption.  There are so many different types of disabilities, ways of dealing with your own disability, and personality differences and interests.  Megan did not stay friends with Arla, who also had a physical disability, because Arla's attitude was that "We will never be accepted by society."  Megan said, although they both had a disability, that the disability was the only thing they had in common.  Their views about themselves, their lives, and goals were quite incompatible.  Friends with cerebral palsy at Camp Easter Seal were O.K. to talk with, but Megan found them "too sheltered".  Instead, Megan identified more with the camp counselors as Megan says, "I don't choose my friends according to whether they have a disability or not."

What can educators do to facilitate the social process of identity development in youth with physical disabilities?  In terms of policies and guidelines, over the years a variety of organizations and professionals have given input to job descriptions related to the care and education of students with disabilities.  There are also union regulations, funding and legal issues that require consideration in the development of care workers' job descriptions.  However, there is more to individualized care than assigning a generalized list of duties to all personal care workers and educators as Megan has pointed out at various times throughout this thesis:

[T]he school board talks about wanting me to have my personal space, my independence, but I'm not getting it.

Why do I have to be watched like I'm being babysat?

I've talked with my T.A.  She knows that I want my freedom.  But, it's in her contract.

The school board makes up the [teacher assistant's] contract.  The thing is they don't know me, they haven't even met me, and they are deciding what I need without even asking me.  They have never called me at home or called to talk to my mom to find out what we want.  How do they know what is best for me?

[B]ut some of those school board members, if they sat here for a day they'd know what it is like.

If one of the purposes of providing care is to provide the best overall care, then we have to go out of our way as educators, as human beings, and make sure that people who are receiving that care are listened to.  Megan connects her frustration with the education system to the health system when she vents,
That's the feud I have with Home Care.  They have two people pulling up my pants at the same time.  There's no reason for it.  When they are pulling with different strengths and at different angles, they put my pants on all crooked, and then my pants are uncomfortable.  When I ask them to straighten my pants, they say I'm complaining too much.  I don't doubt the education of Home Care.  They are smart people.  But when they get smart with their mouths, I get peed off.  There are some workers that are good.  But I put up with a lot of crap with most of them.  I hate it when other people try to tell me what feels comfortable on my body.  It's my body!  I know what feels best for me!
 It is a simple message.  Megan says, "LISTEN TO ME!" and if decisions need to be made that involve me, then ask me what I want.  Nobody respects Megan's request more than her mother.  So many times throughout this research Megan's mother said, "I don't know what it is like to be her, so I can't really say [for her]." And "Yes . . .but it is up to Megan to decide."  Could not educators practice this same level of respect for another human being?  Is this not a form of love?  Garrison (2000) professes that love in education is the perception of the greatest need and the greatest good for the student and the belief that the highest aspiration of the fullest education for everyone can be attained.  To achieve this, educators need care, compassion, and imagination to hear in a way that they may not have heard before and to respond.

Megan's involvement in the data collection, writing, editing, and analyzing of this research created a continual reflection about and reconstruction of this research.  Right up until the end of the research process, it felt as if the work had a life of its own.  I could never quite hold on to it with its constant shifting and resurfacing.  On the night before the thesis defence, I telephoned Megan for her last comments on the final draft.  Megan responded,

It looks good!  I haven't finished reading it yet.  But, you know, there were times that I was reading this thesis, and I forgot who I was reading about.  It was strange.  I found that I was learning from myself.  Is it too late to make any more changes?  I would like to add something from a framed poem that my brother gave me for my graduation.  I don't know where he bought it, but it was the best gift I could have received because it's something that I say to myself every day - "Don't quit."

 
 
 
 
 
 
 
 

There is little
reserach into the friendships of female youth.
 

The friendship of
youth it a very
special form of
intimacy in which
peers talk about
things that they
would never discuss
with adults.

(Frones, 1995)
  
Peer socialization is
important for health,
well-being, influences
to conform or not to
conform to the "in
group", and youth
identity.
 
 
 
 
 
 
 
 

Socializing with peers
in school teaches
students
communication skills
that are needed in all
aspects of social life
after graduating.
 
 
 
 
 
 

"Well, I didn't have a
lot of friends when I
was in school."
 

Friendships are
involved in "the
production of certain
forms of power and
subjectivity."

(Hey, 1997)

 
 
 
 
 

Megan's
disqualification from
friendship groups in
school was related to
difference--racial
and/or disability.
 
 
 
 

Being 'one of the girls'
was more important
than anything.
 
 

"If you were caught
hanging out with a
dork or even talking
with one, people were
banished from
socializing with the
'in people' in the
class."
 

The communication
exchange of note
writing between
friends became part
of the "unofficial
curriculum."
 

Note correspondence
episodes resembled
chain letters that
lasted as long as a
week and included
more than 50
separate exchanges
that transmitted the
cultural values of
friendship.

(Hey, 1997)

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

The desire to become
best friends and the
fear of being
displaced by another
significant other is
very real for girls.

(Hey, 1997)

 
 
 
 
 
 
 

The best-friend phase
lays the foundation
for deeper friendships
later in life.  Without
realizing it, many
educators contributed
to Megan's exclusion
from peer
interactions.
 
 
 
 
 
 
 
 
 
 
 

What are some ways
that educators create
exclusionary
divisions between
students with
disabilities and able-
bodied peers?
 
 
 
 
 
 
 
 
 
 

Peer socializing at
school is an
important need for
identity development.
 

Students with
disabilites are not
getting enough
opportunities to learn
the communication
skills necessary to
form close
relationships with
peers.
 

It is an incorrect
assumption to think
students with
disabilities will be
able to make friends
easier with other
students with
disabilities.
 
 

What can educators
do to facilitate the
social process of
identity development
in youth with physical
disbilities?
 
 
 
 

They are deciding
what I need without
even asking me....
How do they know
what is best for me?
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

"LISTEN TO ME!"
and if decisions need
to be made that
involve me, then ask
me what I want.
 

Educators need care,
compassion, and
imagination to hear
in a way that they
may not have heard
before and to
respond.

(Garrison, 2000)


Table of Contents


End Notes

1 This residential camp is located near Watrous, Saskatchewan.  It is a popular vacation destination for people with disabilities, who require from Level 1 to Level 4 health care.  The camp provides children with an opportunity to participate in sport, water, cooking, and craft activities in a safe environment.  The camp also meets children's unique and dietary needs; but, these are not necessarily considered the primary This residential camp is located near Watrous, Saskatchewan.  It is a popular vacation destination for need as socializing and enjoying life are also important for the children.

2 Kid Rock (1997). "Only God Knows Why". On Devil Without a Cause [CD]. Detroit: AtlanticRecords.

3 The 1999 Saskatchewan Education Indicators: Kindergarten to Grade 12 report states, "the leaving rate for Grade 12 Aboriginal students was 103 percent for the school term compared to 23 percent for non-Aboriginal students.  The joining rate for Grade 12 Aboriginal students was 82 percent compared to 16 percent for non-Aboriginal students" and that student reasons for leaving and joining school were related to family moves and changes in family situations (p. 74).  Saskatoon's Catholic School Board reports that 36 percent of Aboriginal students do not graduate from high school, and 3 percent of Aboriginal students ever enroll in university (1999).  Bouvier, Battiste, and St. Denis report that Aboriginal students as well as Aboriginal teachers have negative schools experiences as a result of systemic discrimination (Okiskinahamakewak-Aboriginal Teachers in Saskatchewan's Publicly Funded Schools: Responding to the Flux, Saskatchewan Education Research Networking Project, October, 1998).  The need for equity in education is further discussed by Bouvier in the Saskatchewan Education report, The Goals of Equity and Social Justice in Public Education: The Role and Responsibilities of Teachers (January, 1996); and by the Royal Commission for Aboriginal Peoples (RCAP) 1996, Gathering Strength, Vol. 3, Ottawa: Canada Communications.

4 Shakespeare is one of Megan's favourite authors.  Megan says, "It is believed that Shakespeare only had a Grade 8 education.  But, despite him only having a few years, he came up with a lot of quotes that we use today."  For her leisure reading, Megan has purchased Shakespeare: The Complete Works, published by New York: Barnes & Noble Books, 1994; and the analyses of the plays in Shakespeare: The Invention of the Human, written by Harold Bloom, published by New York, Riverhead Books, 1998.  To date, Megan has read The Merchant of Venice, Macbeth, The Twelfth Night, A Midsummer's Night Dream, Romeo and Juliet, and Hamlet.  Megan loves viewing Hollywood film versions of Shakespeare and buys the screenplays when they are available.  She says, "I think I am a reincarnation of someone from the seventeenth century, because I love the medieval time period so much."

5 On the first page of The Miracle Worker: A Play in Three Acts by William Gibson, published by Samuel French Inc., New York, 1960.  In a 1975 high-school production, I played Helen Keller's mother Kate.

6 "students with diverse needs" includes those student traditionally served by Special Education (e.g., students with disabilities, gifted students, youth at risk for developmental, learning and behavioural problems because of environmental and other factors), Directions for Diversity, Sask.Ed., 2000, p. vii.

7 Matt Damon and Ben Affleck's screenplay Goodwill Hunting by Miramax Films, New York, Hyperion, 1997.

8 Linde Obst (Producer) and Forest Whitaker (Director) of "Hope Floats"  written by Steven Rodgers, 20th Century Fox, 1998.

9 Rosellen Brown in Mickey Pearlman (Ed.). New York: Houghton Mifflin, 1994, p. x.


Table of Contents


Recommendations

  1. Educators need to create safe school environments for all students by ensuring physical and emotional abuse is not allowed.  Bully Proofing Programs are needed and there should be a zero tolerance for name-calling and harassment (e.g., Megan reported verbal/mental abuse from students, however, the teacher said he could only do something if someone was physically hurt).

  2.  
  3. Establish equity in the classroom and school by discontinuing practices that discriminate on the basis of gender, race, class, sexula orientation, age, religion, ethnicity (e.g., Christmas gift exchanges in the classroom can discriminate against students of lower socio-economic class and non-Christian faiths).

  4.  
  5. Encourage drama education and role play for students with disabilities, in particular, to promote as many avenues for self-expression and social interaction as possible.  Learning through kinesthetic, emotional, sensory, logical, and personal dimensions helps to develop empathy, cooperative learning skills, and confidence (e.g., Megan injoyed school the most and felt most postivie about herself when she was actively interacting with other students in drama).

  6.  
  7. Offer the choice of segragated versus integrated setting for students with disabilities (e.g., segregated settings such as Camp Easter Seal provide students with a place to gather strength to deal with negative attitudes exhibited by able bodied people in integrated settings).

  8.  
  9. Include students with disabilities and their guardians in decision-making discussions about the type and level of care, teh interpretation of that care, and the manner in which that care is delivered at school.  Negotiate a personalized holistic care program before the student begins school.  Discussions should occur at the School Board level in order to adjust the job descriptions of teacher assistants so that they are tailored to meet the needs of each student (e.g., Megan did not want to be escorted from one school room to another.  In particular, she did not want to be escorted from the classroom to the bathroom.  She wanted to be met at the bathroom to avoid embarrassment in front of her peers).

  10.  
  11. Physical education programs need to include students with disabilities in an active way.  This requires teacher education courses within the College of Education and teacher inservices within the profession to demonstrate ways of meaningful inclusion can occur in practice (e.g. Megan felt excluded on a regular basis by being directed to do stretching exercises in the corner of the gym while her peers participated in group sports).  Currently, only the College of Kinesiology offers a theoretical course entitled, "Disability and Physical Activity".  A practical methods course is needed in both Kinesiology and Education.

  12.  
  13. Provide disability awareness workshops in elementary, secondary, and post-secondary educational institutions.

  14.  
  15. Math instruction needs to consider group work and manipulative talk to address different learning styles and cultural differences (e.g., Megan's grades were higher in science than in math when colloquiums took place on a regualar basis).

  16.  
  17. Teacher Assistants (T.A.) should not be used as tutors in the classroom (e.g., Megan's T.A. was expected to help her with math, however, the T.A. did not have any training in math instruction.  The T.A. was used as a screen for providing meaningful help in math).

  18.  
  19. A parent support group needs to be created and woven into the educational system for parents of children with disabilities.  Parents do not need to feel that they are alone.  A support group provides parents an opportunity to share their experiences and offer helpful suggestions for coping.

  20.  
  21. A student support group needs to be created and woven into the educational system for students with disabilities.  A facilitator of the group could assist in channeling student concerns into social/political action.

  22.  
  23. Establish a process by which students with disabilities and their guardians can have their voices heard and needs met.  Self-advocacy is important, however, it does not solve the problem by itself because work is needed at the receiving end.

  24.  
  25. Teachers need to provide "reasonable accomodation" to students with disabilities which means making copies of lecture notes, giving extra time on exams, giving extra time to write assignments, giving extra time to travel from one classroom to another, ensuring social time is not sacrificed at recess or noon hour, and ensuring all students be given an opportunity to attend class field trips with peers.

  26.  
  27. Individualized program plan meetings between student and counselor need to be expanded upon to involve more than course selection and scheduling.  Counseling needs to address the social and other needs of the student by giving the student an opportunity to voice what would be equitable for him/her.

  28.  
  29. Career options need to be explored and meaningful work needs to be considered along with support agencies for the student.  In order for this to occur, teachers/guidance counselors need to have more information about disability issues directly related to school and the work place.

  30.  
  31. Aboriginal students with disabilities need to be recognized as a responsibility by the education and health systems as a whole.  Policies for Aboriginal youth with disabilities need clarity in order to prevent Aboriginal youth from being bounced around different jurisdictions and to provide what is needed when it is needed.

Table of Contents


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