[blindkid] Focus on the children

Tue Jul 15 01:32:40 UTC 2014

Thank you Carlton.  I apologize to the list for my harsh words.  

Sally Thomas 
On Jul 15, 2014, at 9:11 AM, Carlton Anne Cook Walker via blindkid <blindkid at nfbnet.org> wrote:

> 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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