What Adults with Disabilities Wish All Parents Knew

Reflections from a Different Journey

Edited by Stanley D. Klein, Ph.D. and John D. Kemp
Reviewed by Linda Jean H. Larson, M. A. T. Coordinator, Committee on Disabilities, National Council of Churches USA

What Adults with Disabilities Wish All Parents Knew, Reflections from a
Different Journey is a must read for anyone disabled or non. It is
excellent for anyone who is exploring disability for the first time as
well as those well versed in the area of disability. Its greatest asset is
the openness that comes across by all the writers.

In the introduction to the book, the essayists are introduced to the
reader as “…ordinary, accomplished individuals-they are not superstars”
(pg. xvi) on a different journey. This frames the conversation that takes
place within the book.

One gift that What Adults with Disabilities Wish All Parents Knew,
Reflections from a Different Journey offers is an openness that touches
one with humor, anger, reflection, sadness, pain, and “aha” moments where
I learned something new or where I felt connected for the first time
because the writer spoke of my own experience. Although it touched upon
spirituality, I was left wanting more in this area.

A second gift is the approach that the editors took in focusing on the
voices of adults with disabilities as they pass on their life experience.
This is truly a remarkable perspective because, “our disability culture is
transmitted from one of us to another, peer to peer” (pg. 197). No other
culture is passed on this way. This is what gives the book its integrity
and uniqueness.

There is a diversity of disability (i.e. visible disabilities, sensory
loss, physical disabilities and invisible disabilities such as autoimmune
conditions, mental illness, autism) as well as a diversity of occupation,
age, education, male and female voices throughout the book.

This is well thought out except for the diversity of culture, which may
have been included but not specifically stated.

The complexity of living life with a disability is well brought out by
introducing such topics as institutionalization, labeling, special
education-good and bad, human reaction of oppression and fear, from
personal stories.

There are five sections in What Adults with Disabilities Wish All Parents
Knew, Reflections from a Different Journey, each with a series of short
essays around a specific topic. They are, “Love and Accept Me as I Am“,
“Parental Expectations”, “Sexuality”, “Education About Disability”, and
“Afterword: Disability Culture”. This is an excellent way to edit the
book. The reader can read straight through or pick and choose essays for
perusal. This is very inviting.

“Love and Accept Me as I Am”

There is an essay by Gregor Wolbring, “Parents Without Prejudice“, that
speaks to a timely and sensitive topic and that is a “disability rights
approach within the field of bioethics” (pg. 20). Rather than basing life
and death decisions in the field of bioethics on a medical role model of
disability which views disability as something that needs to be fixed and
an individual concern, individuals within the disability community are
calling for a paradigm that honestly speaks to the negative values society
has about disability and the institutionalization of those values.

I smile at the comment made by Mark Enston in his essay, “Take Me as I am
(pg. 29), “People expect people with disabilities to be humble,
conservative, thankful, and, worst of all, mega do-gooders. How boring!”

“Parental Expectations”

This section I find to be very reflective. In “The Rules of the “Game“”,
Jeff Moyer writes, “Acceptance is a requirement for happiness, …a deep,
openhanded and openhearted acceptance” (pg. 47).

In “Giving our Children Roots and Wings“, Barbara Ranmaraine speaks of her
learned experience both as a child with a disability and a parent of a
child with a disability, “Love sets us free; pity imprisons us” (pg. 123).
She also cautions, “Hopes for the future are an important part of growing
up and a life without dreams is impoverished” (pg. 124).

“Sexuality”

Few books offer the opportunity for persons with disabilities to be seen
as sexual beings.

In, “Relational Realism“, Jennifer Malatesta speaks to the heart of the
issue, “If people with disabilities are led to believe that they cannot
expect loving relationships, they may become willing to accept emotional,
verbal, or physical abuse as a twisted legacy” (pg. 133). Persons with
disabilities are twice as likely to be abused as the non-disabled. Yet is
clear that “Each and every person is worthy of love, and no physical,
emotional, or mental disability should preclude it”( pg. 135).

“Education About Disability”

Although this section is about educating oneself about disability, I found
two articles that I feel are MUST read for all educators, most especially
for those in the regular classroom. They are, “Twice Exceptional“, by
Kassiane A. Sibley, a must read for educators and, a very moving essay,
and “Learning Was Always Hard for Me“, by Damaris A. Mills, which offers
practical advice for an inclusive classroom.

“Afterword: Disability Culture” By John D. Kemp

So, what is disability culture? John Kemp states this succinctly; “we are
connected as a culture because of shared indignities inflicted upon us by
poor architectural planning and design and by others’ stereotypically
negative assumptions about us. We are also connected by the frustration
and anger that well up once in a while when we tire of dealing with
prostheses, scooters, and sores-and that makes us search for understanding
by someone who has been where we find ourselves” (pg. 197). Many discount
that there truly is a disability culture. By definition, shared
experience, that which binds us together, is culture. This concept is
where the book leaves us to reflect. This is how is should and needs to
be.

Kemp also leaves us with one inspiring thought by Carol Gill, Department
of Disability and Human Development, College of Applied Health Sciences at
the University of Illinois.

People with disabilities have a heightened acceptance of human
differences…People with disabilities consider interdependence an essential aspect of our lives.

People with disabilities use humor-the ability to find something
absurdly hilarious in almost anything, however dire-without it becoming
self-deprecatory.

People with disabilities have an ability, acquired over time living with
our disabilities, to read others’ attitudes and conflicts in order to
sort out, fill in the gaps, and grasp the latent meaning in
contradictory social messages.

Enjoy, peruse, and reflect. We are all on different journeys. What Adults
with Disabilities Wish All Parents Knew, Reflections from a Different
Journey poignantly and aptly describes mine, along with 54 million others
in this country. I urge you to read this engaging book.
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Order this book from www.disabilitiesbooks.com

Reposted from NCC Home Page