[blindkid] Focus on the children

[Carlton Anne Cook Walker]

Hello,



I am still recovering from the rigors of Convention and the travels
connected thereto. Nevertheless, I take this opportunity to address the
recent communication on the BlindKid listserv dealing with children with
visual impairment, including blindness, and additional disabilities.



ABOUT THE NOPBC and the NFB

          The National Organization of Parents of Blind Children (NOPBC), a
proud division of the National Federation of the Blind (NFB), is a
grass-roots, membership organization. We are a family. Like all families,
we will disagree, and sometimes messily. But, like all families, we are
bound by love. Unlike the traditional “pie” view of the world (where a
larger piece for you means a smaller piece for me), families operate on an
entirely different economic system. As a parent, does your love for one
child diminish upon the arrival of another? Of course not. That’s because
families operate on the economy of love. Love is not diminished by more
receiving it – in fact, it is deepened and enriched. While the older
siblings may feel displaced initially, the family unit thrives when more
are added. And, as with families, the NOPBC and the NFB become greater with
every addition to the family.

          Of course, just as in families, individuals may sometimes feel
left out. This hurts us all. Even if the individual feeling displaced hides
these feelings, hurt, anger, and fear are cancers that erode the health of
the family. Instead of hiding the hurt, we need to share these feelings –
in as respectful a manner as possible. (Lashing out is not a fatal act, but
it can cause others to feel defensive and end up slowing the healing we
seek.) As President of the NOPBC, I welcome input from all – including
those not yet in our family. I, like other members of the NFB and the
NOPBC, am dedicated to providing parents the information, training, and
support they need to help their blind children live the lives they want.



WE ARE INDIVIDUALS AND WE ARE ONE

          The most concerning portion of this communication, to my mind,
has been the “us-versus-them” tone some of the conversations have taken. I
find this to be quite unfortunate and not very helpful. We each undertake
our own journeys on this road of life. It is far too easy to look at the
current path of a fellow traveler and feel jealousy or anger that that
traveler’s path seems so easy. Of course, the paths we see are just a
sliver of reality. We have no idea about the actual travails others have
faced.

And, come to think of it, it doesn’t matter. Our paths are our own. The
ease (or difficulty) of another person’s journey has no direct bearing on
our own. My daughter’s blindness does not depend on anyone else. My
daughter’s other academic and health concerns are neither ameliorated nor
exacerbated by any other child’s health or academic achievements or
struggles. Life is not a pie from which there is a fixed amount of
opportunity.

Each of our children is an individual – a remarkable gift to this world.
Each of us is the parent of a blind child – that’s why we’re here. Both the
NOPBC and the NFB value each of our children as an individual and as a
blind child. Infighting among us and erecting subjective barriers between
ourselves serve no useful purpose. They does not increase our knowledge or
improve our children’s lives. Thus, I respectfully submit that such action
be avoided. Instead, let us collaborate regarding our similarities and
celebrate the unique qualities of each of our children. Let us work
together to raise all expectations and enable our children to be defined as
the individuals that they are – not the disability(ies) they might possess.



DEFINING “AGE-APPROPRIATE” and “INDEPENDENCE”

          I have another concern with regard to the conversation that has
occurred. It appears to me that some have taken away a different definition
of “age-appropriate” and “independence” than I have encountered during my
tenure with the NOPBC and the NFB. In contrast to the descriptions that
have been proffered, I always understood these terms to be defined in terms
of the individual child.

In fact, the words that echo in my mind are those from Dr. Ruby Ryles”
seminal article, *Is Your Child Age-appropriate?*, “Very simply,
‘age-appropriate’ just means that your child is doing the things at the
same age as he or she would have done them as a sighted child.” In other
words, “age-appropriate” is a child-centered term and simply focuses upon
ameliorating the adverse impact of blindness upon a child’s development.
Another term, coined by Carol Castellano and Joe Cutter decades ago seems
apropos: “Age- or Stage-appropriate. (Please note that this is how I define
my services in the educational realm: “I seek to ameliorate the adverse
impact of visual impairment, including blindness, upon my students’
academic and functional achievement.”) Nowhere in this definition does it
appear that a child with multiple disabilities must act as if s/he were
typically developing. Instead, we simply do not accept that blindness, in
and of itself, MUST delay a child’s (any child’s) development.

Similarly, I have always understood “independence” as being child-centered.
When I work with my students with multiple disabilities, including
blindness, I have no difficulty providing necessary accommodations and/or
modifications based upon the child’s current needs. While I strive to help
my students develop skills of independence, I am fully willing to accept
that some of these accommodations/modifications may not be able to be
faded. However, I am always providing my students emotionally-safe
opportunities to grow and lessen or fade accommodations that are no longer
necessary. The NFB’s message of independence has informed this portion of
my instruction, and each of my students has benefitted therefrom. (Please
note that, when necessitated by medical or other concerns, I am quite ready
to add accommodations/modifications – I am simply unwilling to allow my
students to be smothered by them.) Perhaps a better term would be
“autonomy.” The necessity for assistance, itself, is not an indication of a
lack of independence or autonomy. The necessity for assistance because the
student has not been offered the opportunity for more independence (and/or
the opportunity to be in charge of the level of assistance provided --
autonomy) is often an indication that the student has not been offered the
opportunity to maximize his/her independence.



WORKSHOP OFFERINGS

          As noted earlier, the NOPBC Conference, Taking the Next Step,
offered a “track” (three workshops, one in each of the three concurrent
workshop sessions) for parents of students with multiple disabilities,
including blindness/visual impairment. These were as follows:

*Independent Movement & Travel for Children with Additional Disabilities *

*Working toward maximum independence and self-determination for the child
with additional disabilities. *

*Instructor: Denise Mackenstadt, NOMC*



*Hands Off! *

*Honoring the child’s right to personal space and control over his/her
body. *

*Instructor: Carlton Walker, Teacher of Blind Students, President, NOPBC*



*Saying It My Way*

*Encouraging communication, learning, and play in children with
communication needs. *

*Instructor: Natalie Shaheen, Director of Education, NFB Jernigan Institute*

Apparently, some have criticized that my workshop, “Hands Off!” could be
useful for all parents of all blind children. Exactly. That’s the idea. I
can assure you that the workshop was focused upon students with multiple
disabilities, including blindness/visual impairment, but I believe it
contained valuable information for all parents of blind children. Too
often, all of our children are over-handled by adults in their lives –
sometimes with tragic results. The other two sessions listed, while also
geared toward children with multiple disabilities, including
blindness/visual impairment, contained valuable information for all parents
of blind children, regardless of the child’s abilities. Similarly, most of
the other sessions, while geared toward children whose primary disability
is visual impairment, including blindness, would be useful for ALL parents
of blind children, regardless of the presence of additional disabilities.

Each year, our Conference offers workshops geared toward parents of blind
children of various abilities and ages, and we will continue to offer them.
None of these workshops can provide all the needs for any family. However,
each workshop will likely provide nuggets of information (or spark new ways
of considering a problem) that many families will find valuable. I, myself,
often find great benefit from attending those workshops that do not appear,
at first glance, to be geared toward my daughter’s needs.



THE FUTURE

          Please note that the NOPBC is committed to continuing to offer
workshops geared toward parents of children with multiple disabilities,
including blindness/visual impairment. This commitment has been
longstanding, and it will not waver. Our ability to improve in this area
will be strengthened by a frank, constructive collaboration with parents of
children with multiple disabilities, including blindness/visual impairment.

Please do not accuse me of “victim blaming” because we have shown our
commitment in this regard for many years. Instead, I take this opportunity
to formally and wholeheartedly invite parents of children with multiple
disabilities, including blindness/visual impairment, to join our grassroots
NOPBC and NFB organizations and help us to provide the information,
training, and support geared toward your needs.

          I am excited to see several parents answer the call for articles
made by *Future Reflections* editor Debbie Kent Stein. I fully support the
idea of a working group, and I ask to be included in it.



Please let us now come together as the family that we are. Let us speak
frankly and honestly, but let us do so in a kind manner. Let us covenant to
communicate our concerns promptly and as objectively as possible. Let us
all work toward our common goal of preparing our children to live the lives
they want!







Thank you,



Carlton



-- 
Carlton Anne Cook Walker
Attorney at Law
President, National Organization of Parents of Blind Children
Teacher of Students with Blindness/Visual Impairment
105 Creamery Road
Boiling Springs, PA   17007
Voice: 717-658-9894
Twitter: braillemom


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