A Rose By Any Other Name: The National Association of the Deaf (NAD) Broadcaster

This article was originally written  for the above paper in June of 1991.  What is interesting is that not much as changed in almost 23 years.  People are still trying to figure out what to call themselves, hoping their labels will forecast how they ought to be judged.  The reality, of course, is that it is the individual who matters; the nomenclature and stereotypes will come and go.  Also, society will judge as it wishes, and all the fancy labels in the world cannot change what the public wants to think, once the public makes up its mind...  

I read, with some interest, Ms. Kailes' February, 1991 article on the use of language.  I don't disagree with the author and her viewpoint, but lately, I find so may people concerned with what to call each other; I wonder if the focus isn't shifting away from how to treat each other.

The American Indian/Redskin is now the docile Native American; the Oriental has morphed to the Asian; the once Colored then Negro then Black has become the African American; the Mexican is now the Hispanic or Latino, depending on specific geography of origin, despite sameness of language.

For awhile, the Deaf were the Hearing Impaired until it was decided that the oral Deaf would remain Hearing Impaired, and the signing Deaf would return to their original name and be just Deaf.  The handicapped want to be the disabled, or the challenged.

I wonder how the cultural anthropologists and sociologists manage to keep up!

The problem with "disabled" is the implication of time and brokenness/non-usable-ness; i.e., once one used to be able, but now because of circumstance, he is dis-abled.  The original meaning of the prefix "dis" (not) implies apart-ness, a whole no longer complete or now in two or more pieces.

A cup with the handle broken off is disabled.  A sink whose faucet has been disconnected is disabled.  A man whose leg has been amputated is disabled. There is a sense of time having passed.  There is an implication that that which was once useful and whole is no longer so; function is non-operable.

My daughter as born with multiple medical involvements.  No time passed; nothing happened to her that transformed her from a whole into parts.  I don't think of her as "dis," or "not."  Most of her parts work all right; some of her parts operate on a partial basis.  I don't recall abilities once hers, that are no more.  I do think of her as handicapped, as there are clearly tasks with which she needs special help; she always has and will require significant assistance.

Ms. Kailes refers to the term "handicapped" as being a derogatory one; it calls to her mind the individual on the street corner with cap in hand, begging.

(In truth, the hand in the cap--not the other way around--was an aspect of horse racing, many years ago in Great Britain; the jockeys, vying for the most advantageous place on the track, would draw numbers out of a cap; hence, the derivation of the word.  He who drew the best number, had the inside path; he who drew the worst number was stuck with the outside path and a greater likelihood of losing the race.  The good or ill fortune of the horse's position around the track was a result of the jockey's "hand-i-the-cap.")

In sports today, golfers and bowlers have handicaps; horse racing still awards handicaps; there is a handicap in betting. There is no shame in the word, or in the use.  Rather, the condemnation is in peoples' opinions.

Recently, I met a physician who denied both terms.  He liked the idea of the "exceptional body"  instead of either "disabled" or "handicapped." My, I thought, my little girl is only eight, and already, she's up there with Madonna and Marilyn Monroe.

I keep wondering when Jews are going to change their names.  Anti-Semitism increased by 18% this year; it certainly would be a good time to enhance self-image, and the concept of the altered "handle" is very much in vogue.  I was considering the possibility of "American Moses-ite..."
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If changing the name or label of an individual or a group assists with positive group or self-identity, I'm all for it.  If that same change also heightens the awareness and sensitivity levels of the broader society, I'm in favor of that, too.

I just hope people understand the old adage, "Actions speak louder than words."  Terms don't start out with positive or negative connotations, only objective denotations.  The former is imposed by the response from society. Once "queer" meant to be odd, and "gay" meant to be happy.  Now, both connote homosexuality--one negatively, one positively.

If "disabled" is more palatable than "handicapped," then let it be so.  If the larger community is more comfortable in accepting the disabled rather than the handicapped, I guess I think that's fine.  If individuals would rather be identified as "disabled," instead of "handicapped," I support that, too.  Often, it's not what the word means that counts; rather it's what the word implies.

The choice of this term or that is not what is most important, but rather that we are taking the time to care about our places and our acceptance in this world.  We are demanding to be recognized with a sense of pride and integrity.  As long as accomplishments measure up to the demands for verbal dignity, there should be no problem.

Bully for You...Written for the Colorado Cross-Disabilties Coalition

People go into professions that suit their personal psychological needs as well as their physical and mental abilities.  A pediatrician, for example, usually has his own more childlike view of the world and enjoys children; a physician who treats only adults, will be more comfortable with patients and people who are over the age of 18.

Those who relate well with others, do just that in their workplaces--they enjoy the camaraderie of their colleagues, and their customers.  Folks who are more task oriented, preferring to involve themselves with skills rather than customers, orient to occupations that are duty-focused.  Individuals who would rather control or direct, are most often selected for leadership positions, not wanting to be confined to the day-to-day tasks, nor having to "relate" to folks as their primary goal.  These are your three types of workers: "Taskers;" leaders; "relaters."

It generally works this way.  Sadly, workers who are in the wrong jobs for their psychological needs, either don't remain there very long, or aren't very effective in terms of performance--let alone occupationally fulfilled.  Career preferences chosen according to an individual's psychological needs are as important as any training, schooling, or experience that one encounters.
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The world of disabilities is enormous.  Today, people are living longer, managing to survive terrible ordeals, illnesses, and deficits. When an infant or child is too immature to advocate for himself, when a person's physical, mental, or emotional abilities are compromised, when aging takes those properties from people who were at one time, able to function independently but no longer can, there is a dis-ability to participate adequately within the mainstream world.

Providers are called in: Caregivers in all varieties; social workers; healthcare professionals; medical support personnel; educators; job coaches;therapists; advocates; nurses along a wide spectrum of expertise re: special needs; agencies for this function or that.

One of the tragedies, yet all-too-frequent realities for the more "helpless victim" and the "rescuing caregiver" or provider, can be a blur between professional and personal needs on the parts of the caregivers and/or the people who are in charge.

The primary role of the caregiver, in any capacity, is not meant to be a personal one, but a professional one. There are boundaries or limits between client and caregiver; there are duties or executive orders that lie between them. While a caregiver must be compassionate and understanding in his job, the role of a provider primarily is not about being a people person, so much as it is about being a task person.  Get the job done, provide comfort and proper care, above all. Duty first.  Or the patient can be injured or die. Nurturing, protection, enabling, have their places; however, the caregiver's focus must be objective, and separate from the client or patient, before all personal involvements.

What can happen, when an individual who is primarily a people person (who wants to be friends, pals, a parent or sibling) is placed in the caregiver's dutiful role, and that professional is truly not suited for properly performing regimented tasks and executing details, lines get crossed.  The caregiver who is more personally people oriented instead of distanced, disciplined, and objective enough to perform and organize in an exemplary manner, ends up re-focusing his or her own "duties" so that they become more about controlling the patient, rather than seeing to those elements that surround the patient, and support his wellbeing.  A kind of guardian effect may occur, where the healthcare professional decides that a personal relationship with the client is more important than the tasks this professional was originally hired to perform: Father knows best? Mother knows best?  Nope.  Support person knows best. And, that's not okay.

Caregivers, providers, support people, or agencies of any type, can easily slip away from the tasks at hand, and become instead, very people oriented or personally involved with the patient.  Thus, the priority of the caregiver is no longer about objective care, but subjectively about the patient needing care that seemingly only the caregiver can provide; that only the caregiver knows how to provide.  It creates a dependency, and it validates the caregiver's psychological need to be personally connected, in order to be of value.  The tasks the caregiver was originally hired to perform for the patient, become secondary to the caregiver's own psychological needs.

What is potentially worse is the same scenario but where the caregiver becomes a leader, or puts himself in charge of the patient; a role of importance and control, not through a personal relationship, but rather through a kind of executive decision made by the caregiver, himself.  This healthcare provider or caregiver, legislates the needs of the particular client or patient to the exclusion of others--including the patient, himself.   Control gradually becomes absolute.  It is no longer about the patient's receiving objectively evaluated care from a competent task person; all else is subordinated to the caregiver's need to control, commanding others to do what was once the caregiver's actual task-oriented job of scheduling, organizing, and executing specific duties.

The inappropriate shift in roles, in order to fill personal psychological needs, warps a caregiver in whatever capacity; the thrust of that individual toward his client, student, or patient, is no longer a clear, distanced evaluative focus, but rather one of superiority.  It's all too easy when tending folks who are challenged in one way or another, to forget about respect, empathy, distancing, boundaries; and to slip into the role of ruler, surrogate parent, or boss.   Providers and caregivers, remember, come in all sorts of ancillary job descriptions, when networking the world of healthcare.

People who are caregivers or providers in agency work or on their own; who have more psychological needs than their particular job placement may provide; on a day-in-day-out, year-by-year kind of schedule (particularly with the same clients for extended periods of time); are most susceptible when it comes to slipping out of their assigned duty-oriented careers; rather, they ease into an orientation of control.

Certainly, there are practical reasons that exist for caregivers to have a certain amount of supervisory influence, when people are disabled or challenged; these professionals are presumably trained accordingly, they have experience, and they are familiar with the patient's history in one way or another.  It is true that patients often need direction from others, in order to guide and assist themselves.

However, direction is one thing; bullying is quite another.

Simply because a person or agency has done a job for years and years and years; has expertise in his field; has taken responsibility in various areas of his vocation; it does not give him a green light when it comes to taking charge of another person's life, to the exclusion of that individual's personal rights or the rights of others. When it comes to contribution, input, or care that is of significant benefit to a patient or client, there must be shared responsibility between all parties; the professionals must stick to the job descriptions they were meant to carry out.

When any caregiver or support person takes over the rights of a particular individual; when that individual becomes manipulated or less independent as a result of increasing control on the part of that caregiver, what is referred to as "for your own good," is more aptly  labeled "ego trip."  It speaks to the psychological needs of a healthcare professional or agency gone awry and who has turned away from the tasks that are his responsibility;  instead, twisting his job to suit himself, either by creating a too dependent relationship with the client, or by legislating what the client needs or ought to do:  Not only so that it ostensibly suits the client, but primarily so that it suits the caregiver's needs to control, as well.

Either way, it's about personal psychological needs trumping job-description. It's about bullying rather than advocating for the patient's right to be treated as normally as possible, and with as much dignity and respect as possible, given his special situation.

Talking It Over

My daughter is severely and multiply disabled.  However, I've raised her at home for 31 years, as a "well," "normal" child.  I refer to her as a "child," because she's 5'1", weighs 100 pounds, is quite boyish in appearance, and lives in the world of Mario, and Sonic the Hedgehog.  She really is a child.

I also have Sydney, the pooch.  It's taken about a year and a half for the two to bond; for Hillary to realize that sibling rivalry is not necessary between the two of them, and that I can care about both the dog and my daughter differently but equally, at the same time.  No one loses; I don't play favorites.  Except sometimes...

Yesterday, it came time in the dog's routine to go outside and pee; alas, it was raining.  I told Hillary to let Sydney go, but to watch him and not make him stay out there, drenched, any longer than necessary.  He is only 10 pounds, after all; just a little fellow.

She lets him out.  Then, she follows him.  In the rain.   Because Hillary is deaf, we speak in Sign language. Hillary also has a tracheotomy tube, so she cannot vocalize or utter a sound.  "Away! Away!" she flaps, her arms outstretched, and pumping up and down at the wrists.  Syd, who by now has gotten the gist of things with Hillary, understands what this means without a single spoken word; he obediently pads down the stairs of the back stoop.

With a backward glower, it is clear that he is not happy to go out in the rain; nevertheless, he unwillingly lopes toward the middle of the grassy yard.  Hillary's next move is to sign to him, "Toilet! Hurry!"  Being a fellow of few words, himself, Sydney looks at her with a, "Who, me?  What was that you said, again?"

Hil thinks about this, and figures it out.  It all happens in a second.  She will have to be more explicit; more direct.  In her mind, it is Sydney who is at the disadvantage.  After all, he has paws and not fingers; Sign language comes more slowly for him.

Thus, in an effort to help him understand, Hillary gracefully lifts her left leg into a full hoist, while she stands there at the top of the stoop.  As if to pee.  Sydney, wet and circling there on the grass, looks up at her in the rain, considering this.

Hillary has no time to lose.  The rain is coming down faster, and she is getting wet, too.  She moves closer to the dog, edging toward the lawn.  She lifts her leg again higher, at least two feet off the ground, and shakes it so that Sydney will be sure to observe the posture he is supposed to take.

Still, however, no results.

This time, Hillary considers a change of plans.  Perhaps a metaphor, she thinks:  She puts her "hind" leg down, and from both knees, squats, girl-style.  Figuring that perhaps Sydney isn't used to seeing her pee like a male dog, he might relate better to her peeing like a female dog.   Interestingly, this move inspires him, and he begins to circle and sniff more seriously; the rain is ever-present.

Observing that she has made progress, but not quite enough--and particularly given the wetness of things-- Hillary stands upright again, lifts her left leg, then her right, and back to her left, holding each for a moment or two--high up and extended--bent at the knee.  What do you know?!  Sydney stops, stares, and processes what the message is all about.  Looking at Hillary, as if looking at his instructor in a ballet studio, Sydney, too, lifts his leg, and makes the effort to pee.  ...  Success!

Hold it!  Maintain that position!  Ahhhhh.  Both child and hound lower their legs in tandem, together: Smoothly, rapidly, finally. She smiles, in charge; he relaxes, obedient.  Now, they may go inside; both pleased with themselves and each other.

The rain continued to fall and, quickly both hurried for dry comfort.  Hillary gave a backward glance toward the grey sky and pouring down heavy drops of water.  Her arms flew up, and once again her hands bent at the wrists, flapping up and down at the out of doors; the original motion she had made, instead of signing Away, marked, "Finished!"

Paved With Good Intentions: Article for Intermountain Jewish News

I just read your article about the funding challenge for special education in Jewish day schools: $162,000 needed for 11 disabled children; that's almost $15,000 per year, per child. What I want to know: What is the expenditure per child for regular education Jewish day school students, and how many regular education children are there proportionate to these 11 special needs children?

The February 16th article states that this money is specifically for an "inclusive" special education population (children who are included in regular education classrooms with assistance--wherever, whenever, however, with whomever is necessary to bring their individualized learning experiences in line with regular education students).

While inclusion is beneficial for many students, several become overwhelmed and/or frustrated: Some children don't have the cognitive or sensory abilities to participate in the inclusive environment, no matter how many devices or teaching aids are provided; others are not emotionally or behaviorally equipped to handle the rigors and/or pressures of a regular education classroom.

Regular education students and teachers may become negatively impacted in inclusive classrooms because their own teaching and learning capabilities are not patterned for complex special education needs; time that could be spent forging ahead with mainstream academic concepts is traded for accommodation to adaptive learning by the included population. Development of social skills, acceptance, understanding individual differences, are of utmost importance: However, to what extent must academic excellence be sacrificed for their sakes?

Certain state and federal civil rights/special education laws do not bind private schools: They are not enforceable in these classrooms. Hence, while the spirit of Jewish day schools may be to provide "equal opportunity and access under the law," its legal teeth are missing. The good news for special education funding is that not every legality or expenditure has to be met; the bad news for students who are disabled is that not every legality or expenditure has to be met.

The Bush Administration wants to allow federal funding to be funneled towards religiously sponsored benevolent programs. This might be ideal for financing special education in Jewish day schools. However, federal funding mandates federal law enforcement. This necessarily means that along with additional moneys in the Jewish day school coffers, all children must be granted the same rights, privileges, and denials as public school students: To the letter of the law. The very best of intentions and positive educational goals for the disabled may become slippery academic, legal, financial slopes, as private schools have to comply with public education guidelines.

Given there is a genuine desire to allow disabled Jewish children access to an "equal and appropriate [private] education," no matter individual learning requirements or disabilities, these schools would have to carefully evaluate and provide for the specific needs of each child, no matter the cost, no matter the placement in regular, inclusive, mainstream, or self-contained classrooms. Bound by the same rules, private schools would have to provide at an enormous cost, all of the same services that public schools already offer for free.

There must be licensed, accredited special education programs, teachers, para-professionals for every diagnosed disability; evaluative testing, access to medical therapies and learning specialists; psychological evaluations, special education coordinators, augmentative learning curricula, assistive technology; legal staffs for possibilities of mediation, due-process, lawsuits for violation of student and/or parental rights.

Special education is not for the feint of heart. It is not simply a matter of doing a good deed, or writing a check. It is an enormous political, legal, medical, and professionally trained academic undertaking. If the Jewish day schools wish to dedicate themselves to this task in addition to their other priorities, so much the better. But if they do so on the sole basis of good will and the best of intentions, funding will be the least of their difficulties, and all students and teachers alike will be the worse for the endeavor.

Bringing A Soul To Life: Interview with Debra Hindlemann Webster

Hillary Webster, now 14, is an active child with large grey eyes, and inch-long brown hair.  She was born with multiple congenital anomalies:  Tube-fed (gastrostomy) since birth; a breathing tube (tracheostomy); impaired fine and gross motor control; autistic tendencies.  Hillary has massive cranial nerve damage  (nerves which control the operation of neck, face, sensory, vocal and eating abilities).  She is Deaf, she is learning disabled, she has Tourette Syndrome.

Hillary has been kept alive with the support of 5 life-support machines, and she requires 24 hour per day medical care.  She can experience touch and sight, but she cannot smell, taste, nor hear.  Although she knows some sign language, she has a major language disorder.  Yet, despite the challenges, Hillary’s mom points out that “she is bright, strong-willed, and has been raised as a well child:  She lives at home, she goes to public school, and she has friends.”

Always looking for ways to encourage her daughter to respond to her environment, Debra Webster had read that therapeutic riding often proved beneficial.  She felt that what it offered—a sense of locomotion, control, and bonding—were worthwhile pursuits.  When Hillary turned 5, she was enrolled in a weekly therapeutic program.

Debra cautions:  “It’s difficult to specifically gauge the effect that the horses had upon Hillary because she cannot express her thoughts as others do, and speak for herself.  However, there is every reason to believe that her riding experience helped enormously.”

It was her mother’s goal to provide Hillary with the opportunities which could be gained from riding.  The animals were available to demonstrate the sensation of locomotion, and Debra reports, “The horses’ movements beneath Hillary were as though they were her own.”   Hillary began to walk. 

Hillary had been involved in physical therapy since her birth, as well as the more recent therapeutic riding; it is impossible to say which form of therapy contributed which ingredient, or which was the more influential.  Yet, after 2 years of riding, Hillary was able to walk independently—she had finally understood the process.

Riding definitely helped Hillary to gain a sense of control and self-esteem.  Sometimes Hillary would start to cry when she was first put on the horse, but when her mom or dad asked if she wished to stop riding, she refused.  She insisted on continuing her lessons.  Riding gave her the feeling that she was someone special; she could finally do something which none of her friends knew how.

Hillary took lessons for 6 years, and her mother states that Hillary looked forward to the relationship she shared with the animals.  She treasured the grooming, the saddling and unsaddling, the feeding time.  It was soothing to both Hillary, and her mount.  She enjoyed watching the animals for hours—especially their lips and whiskers (how they moved when they ate).  Perhaps it was because Hillary’s facial muscles were paralyzed; perhaps it was because Hillary could not eat by mouth.  Whatever the reason, she was fascinated.

Possibly the most important aspect gained by Hillary from therapeutic riding was that she made friends with the horses.  She allowed them into her withdrawn and silent world, and they helped her to understand how to reach out and relate to others. 

Hillary made significant strides in her 6 years with the therapy.  She experienced the Special Olympics and multiple horse-shows.  She was able to win ribbons—something that field-days in public school could not accommodate for children with multiple disabilities. 

As the years have gone by and Hillary has matured, her experiences have broadened and her interests have narrowed more to those things where she can do her best.  Riding has become less of a priority, replaced with art, computers, and picture books.  

“Even though her interests have changed, there is every reason to believe that therapeutic horseback riding was a significant influence in her life,” said Hillary Webster’s mother.  “The animals encouraged my daughter to accept the challenges of movement, of increased self-confidence and self-esteem, and of increased empathy with other living beings.”

Deaf Capitalizing on Cultural Pride: Editorial for National Association of the Deaf (NAD) Broadcaster

catwalker/shutterstock.com

America's Deaf community adopted a capital "D" to promote self-respect.  Tired of the old image that deaf people are disabled, the silent culture has come up with its own powerful identity, insisting that "Deaf" begin with a capital "D."

"A basic rule of English grammar is that all proper nouns are capitalized.  That's any specific person, place, thing, or idea--including Deaf life," said Mary Elstad, former teacher at the Colorado School for Deaf & Blind.

Tom Willard, editor for "Silent News," a national Deaf newspaper wrote, "When 'deaf' is not capitalized, it generally refers to...a physical disability. When it is capitalized, it denotes deafness as a cultural trait...as Hispanic or Russian is capitalized."

A person can be one, the other, or both.  The first is circumstance; the second is commitment.

It has become evident that Deaf people have pride in their own way of life. Popularity of the National Theater of the Deaf; Gallaudet University students choosing their own Deaf president; increased demand for use of American Sign Language; closed captioning of films and television programs; these are strong indicators of a thriving culture.

Mourene Tesler, executive director of Denver's Center on Deafness and activist for the Deaf said, "We think of Jews and Japanese--not jews and japanese--as peoples with their own languages, TV programs, theaters, newspapers, and schools.  They have their own styles, senses of humor, behaviors.  They are separate cultures existing within the mainstream.  The Deaf world is no different, and expects the same recognition."