Terry Kozloff
terrykozloff@yahoo.com
terrykozloff@yahoo.com
MY JOURNEY WITH JAKE, A REVIEW
Miriam Edelson's son, Jake, was born in 1990 with lissencephaly, a brain malformation causing severe mental
retardation, seizures and poor muscle tone. In My journey with Jake: A Memoir of Parenting and
Disability,(Between the Lines, Toronto, Ontario, Canada, 2000, $24.95) Edelson shares her feelings, emotions
and values
Edelson has a deep love for her son, worries that his life remain comfortable, pain free, and that his care be
palliative with no heroic measures to keep him alive. Edelson believes Jake's quality of care is best managed
outside the family home, and feels the reality she must face is that his life will be short, and therefore, anticipates
and plans for his death.
Edelson shares her disappointments associated with having a child with disabilities, and struggles with her desire
to have a career and being with Jake. Edelson feels proud of the voice she has found, inspired by Jake, as a
recognized advocate for children disabilities and their parents, believing institutional care is a necessary option
and the history of such care is not relevant today.
Upon completing the last page of My journey with Jake, and after taking the time to examine the message lying
beneath the surface of her words, I concluded that indeed the same attitudes which created the first state
hospitals in the 1800's for the Jakes who had been rejected by their communities, still exist today and are
embedded deeply within the core of society.
To deny this, does not make it any less so.
I wondered if my children and I will have the opportunity to live within a society that embraces the inclusion of all
people with disabilities in the mainstream of life. That has been my hope.
Each page I read, left me struggling with my own personal integrity and values as I found myself questioning and
examining those of Edelson's. I too am a parent of a young son with severe disabilities, and since there is an
unwritten rule that no parent shall pass judgment upon another, I felt as if I stood in violation.
The lives of the two boys are shockingly different, yet their prognosis so similar. My son's life filled with friends,
opportunities, and living. Jake's life is not.
Edelson does not believe that her son's life is what it should have been. I believe my son's life is precisely what it
was always meant to be.
Edelson offers no insight on the fundamental issues of what it means to be human and our responsibilities to
each other before God. She does not explore the profound and abiding issues of human rights, human dignity,
and human freedom, nor does she examine the right of a child with a disability to live a life filled with opportunity,
and to grow up in families.
I worry My journey with Jake will only serve to drive the need for supports away from communities and focus on
care outside of the family home, since it will undoubtedly be read by social workers, university and college
students, public policy makers, medical professionals, and parents and other members of society.
The Community Imperative declaration originally issued in 1979 by the internationally acclaimed Center on
Human Policy declares that all people, as human beings, are inherently valuable, and in the domain of Human
Rights, all people have fundamental moral and constitutional rights that must not be abrogated merely because
a person has a mental or physical disability. Among those rights is the right to community living.
Dr. Burton Blatt, who died in 1985, was the founder of the Center and was the inspiration behind The Community
Imperative declaration, and one of the first professionals to speak out publicly in the 1960's against the
dehumanization of people with mental retardation in America's institutions, said something many years ago that
remains applicable today:
"We have forgotten that everyone in our community deserves to be a part of it."
The medical profession has forgotten when parents like Edelson are left alone in a hospital corridor to absorb
her son's diagnosis and how that diagnosis was presented to her - without compassion or feeling. Public policy
has forgotten when it fails to fund community supports for people with disabilities and leaves institutional living as
the only alternative for many. Families have forgotten because they are left alone to make choices from
inadequate options of support and living for their family member.
Would Edelson have said, "Jake is not the child I planned to give birth to. That child was well. That child would
have come home with me after two days in the hospital, and we would have built a family together," if society
embraced Jake's inherent value?
Would Edelson have felt compelled to discuss withholding medical treatment from her baby that would allow him
"die a natural death," if society had already rid itself of the stigma associated with the quality of life lead by
people with disabilities?
Would Edelson have made the decision to place Jake in a group home two hours away from home when he was
less than one year old, if society cared that Jake and his family needed supports at home so the family could
remain a unit?
My journey with Jake ended with Edelson's plans for her son's last days, his cremation, a grave site, and
memorial service. This caused me to reflect upon the camping trips my son has taken with his classmates, the
birthday parties he has been invited to, the friends he has found, the lives he has changed, and all the future
holds for him.
The future for my son may include one more day or thousands more, but we never forget that life is about living.
This review was originally published in Volume VI, No. 1 of The Journal of Religion, Disability, and Health.
Permission was granted by The Haworth Press, Inc., for re-publishing.
Miriam Edelson's son, Jake, was born in 1990 with lissencephaly, a brain malformation causing severe mental
retardation, seizures and poor muscle tone. In My journey with Jake: A Memoir of Parenting and
Disability,(Between the Lines, Toronto, Ontario, Canada, 2000, $24.95) Edelson shares her feelings, emotions
and values
Edelson has a deep love for her son, worries that his life remain comfortable, pain free, and that his care be
palliative with no heroic measures to keep him alive. Edelson believes Jake's quality of care is best managed
outside the family home, and feels the reality she must face is that his life will be short, and therefore, anticipates
and plans for his death.
Edelson shares her disappointments associated with having a child with disabilities, and struggles with her desire
to have a career and being with Jake. Edelson feels proud of the voice she has found, inspired by Jake, as a
recognized advocate for children disabilities and their parents, believing institutional care is a necessary option
and the history of such care is not relevant today.
Upon completing the last page of My journey with Jake, and after taking the time to examine the message lying
beneath the surface of her words, I concluded that indeed the same attitudes which created the first state
hospitals in the 1800's for the Jakes who had been rejected by their communities, still exist today and are
embedded deeply within the core of society.
To deny this, does not make it any less so.
I wondered if my children and I will have the opportunity to live within a society that embraces the inclusion of all
people with disabilities in the mainstream of life. That has been my hope.
Each page I read, left me struggling with my own personal integrity and values as I found myself questioning and
examining those of Edelson's. I too am a parent of a young son with severe disabilities, and since there is an
unwritten rule that no parent shall pass judgment upon another, I felt as if I stood in violation.
The lives of the two boys are shockingly different, yet their prognosis so similar. My son's life filled with friends,
opportunities, and living. Jake's life is not.
Edelson does not believe that her son's life is what it should have been. I believe my son's life is precisely what it
was always meant to be.
Edelson offers no insight on the fundamental issues of what it means to be human and our responsibilities to
each other before God. She does not explore the profound and abiding issues of human rights, human dignity,
and human freedom, nor does she examine the right of a child with a disability to live a life filled with opportunity,
and to grow up in families.
I worry My journey with Jake will only serve to drive the need for supports away from communities and focus on
care outside of the family home, since it will undoubtedly be read by social workers, university and college
students, public policy makers, medical professionals, and parents and other members of society.
The Community Imperative declaration originally issued in 1979 by the internationally acclaimed Center on
Human Policy declares that all people, as human beings, are inherently valuable, and in the domain of Human
Rights, all people have fundamental moral and constitutional rights that must not be abrogated merely because
a person has a mental or physical disability. Among those rights is the right to community living.
Dr. Burton Blatt, who died in 1985, was the founder of the Center and was the inspiration behind The Community
Imperative declaration, and one of the first professionals to speak out publicly in the 1960's against the
dehumanization of people with mental retardation in America's institutions, said something many years ago that
remains applicable today:
"We have forgotten that everyone in our community deserves to be a part of it."
The medical profession has forgotten when parents like Edelson are left alone in a hospital corridor to absorb
her son's diagnosis and how that diagnosis was presented to her - without compassion or feeling. Public policy
has forgotten when it fails to fund community supports for people with disabilities and leaves institutional living as
the only alternative for many. Families have forgotten because they are left alone to make choices from
inadequate options of support and living for their family member.
Would Edelson have said, "Jake is not the child I planned to give birth to. That child was well. That child would
have come home with me after two days in the hospital, and we would have built a family together," if society
embraced Jake's inherent value?
Would Edelson have felt compelled to discuss withholding medical treatment from her baby that would allow him
"die a natural death," if society had already rid itself of the stigma associated with the quality of life lead by
people with disabilities?
Would Edelson have made the decision to place Jake in a group home two hours away from home when he was
less than one year old, if society cared that Jake and his family needed supports at home so the family could
remain a unit?
My journey with Jake ended with Edelson's plans for her son's last days, his cremation, a grave site, and
memorial service. This caused me to reflect upon the camping trips my son has taken with his classmates, the
birthday parties he has been invited to, the friends he has found, the lives he has changed, and all the future
holds for him.
The future for my son may include one more day or thousands more, but we never forget that life is about living.
This review was originally published in Volume VI, No. 1 of The Journal of Religion, Disability, and Health.
Permission was granted by The Haworth Press, Inc., for re-publishing.
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