Braille Monitor                          February 2019

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Speaking Over Me Won’t Stop Me

by Aaron Rupp

Aaron and Terri Rupp with their children.From the Editor: Aaron Rupp is the husband of Terri Rupp, president of the National Federation of the Blind of Nevada. Their daughter Marley is in school, and when you have a blind student in a public school, you have the challenge of working on an individualized education plan (IEP). It can be difficult to be a parent negotiating for one’s child when you feel your comments are disregarded by people who think your lack of professional certification means that your comments weren’t worth the time taken to listen to them. Here is Aaron’s reaction to a recent IEP for his daughter Marley:

Sitting in this chair, my heart is pounding. Seriously pounding, to the point that I have to consciously focus on breathing to stay calm to be able to conduct myself appropriately and stay focused at this critical moment. But the pounding is almost all I hear and feel.

At the table with me is my wife Terri, mother of our daughter Marley, and Marley's educational "team." And sitting across the table from me is the school district's cane travel instructor, discounting me and my wife every time we speak.

The discussion surrounds the selection of which cane Marley is to use. We want the longer, lighter white cane, while she feels that the shorter, three-times-heavier cane with a big ball tip is the best choice. Every time we speak about what the white cane means or mention the philosophy of advocacy and higher expectations/standards we live by and expect for ourselves, including Marley, a look of sheer disgust smears across this teacher's face, followed by a heavy roll of the eyes and pulling of her brows as high as she can, finishing off with a sarcastic smile to the others (Marley's principal, kindergarten teacher, low vision teacher, and special services coordinator) clearly saying, without using words, who the blank do you think you are to make decisions for your daughter, and I can't believe we're wasting our time listening to his rantings, folks.

This is the look, but the words she uses are, "What training and credentials do you have in orientation and mobility (O&M)?" The implied question is, why do you think you should have a say in the course of your daughter's independence development? What she says is, "I have a masters in O&M and years of experience. Marley's white cane with the metal tip is a danger to others."

I look at these divine and almighty credentials of hers as a hindrance. She has had six years of formal training on how a sighted person tells a blind person what's best for them, and she has been teaching subprime methods that do not encourage confidence or allow our children to navigate through life at an equal pace with their peers.

What does the short cane mean to me? Because it is shorter, instead of picking up on obstacles and landscape variations several feet in front of the traveler, they discover steps and walls when the obstacles are literally inches in front of their toes. Short canes set the expectation that safe travel means far slower, less confident walking, and that is a fact. Short canes equal tenseness because the reaction time must be immediate.

The standard cane being pushed by the school is heavier, two to three times heavier than her long white cane, with a weighted stub at the end that is meant to be pushed/dragged, grinding against forward motion with every step. It catches on every crack, rock, and twig the user encounters. This does not allow the cane traveler—including my daughter—to move freely or on par with her peers. Again, it reinforces the foundation of lower expectations and standards. That is a fact.

Most importantly, the difference symbolically from the short, red-ended heavy cane versus the long white cane is immense. The standard cane originates in the UK circa 1921, created by James Biggs, who found himself newly blind and painted his walking stick to become more visible (White cane, The long cane was developed in 1958 by the Iowa chapter of the National Federation of the Blind, designed to "enable us to walk faster without diminishing either safety or grace” (“The Nature of Independence” by Dr. Kenneth Jernigan, One was created from a "discomfort from the amount of traffic around his home," and designed for the purpose of "being more visible." From the inception of its development in England in the 1920s to France in the 30s and the Lions Club in America in the 50s, the main theme to its development and adoption into law has been the concept of visibility, alerting others to the presence of a blind person. In contrast, the long white cane was created as a result of dissatisfaction with the, as Dr. Jernigan put it, “the short heavy wooden type, and we youngsters associated carrying a cane with begging, shuffling along, and being helpless.” This new cane was designed for the purpose of helping blind people advance on the road to freedom and independence. This shift was mentioned many times by Dr. Kenneth Jernigan, and these are facts.

In short, one symbolizes "Look out, I am a handicapped person, and I can't get around that good," while the other symbolizes "Look out, I'm a handi-capable person, and I'm coming through!"

This lady's perspective and decisions regarding the training and foundation for Marley and countless other children are based on conventional education and only values input that supports her lower expectation standards. Our perspective and decisions are framed from lifetime experience, Terri being blind since childhood, and me having been partnered with her for the past eleven years. As a child Terri went through a system that enforced the negative promotion model of blindness. She learned using a short cane, and Braille was not encouraged. When we got together, she was in college. Staying up all night trying to keep up with the required reading, with her face pressed down into the book on the table, was common. Reading at fifteen to twenty words a minute was why it took so long and caused the physical problems that come with trying to read what one cannot see and therefore cannot read efficiently. Walking into light poles and fire hydrants were a part of her days, all because someone had a different idea—a professional idea—of what a blind person should be and what devices she should use. It wasn't until she adopted a positive promotion model that she dared to have the audacity to live the life she wanted. She got the proper training. Now she runs 5k's, navigates airports solo, is an amazing mom, and reads faster than George W. speaks!

Do you think a formal education experience ever landed this teacher in a room of several thousand successful blind people cheering at the top of their lungs in celebration of their independence, or meeting blind doctors, Harvard graduates, Everest climbers, and elite triathletes? Probably not, which is why her expectations and view of the blind are unwittingly discriminatory and are exemplified by her insistence on subprime and archaic teaching methods.

Cane travel skills are like handwriting skills. Am I to expect my five-year-old to be writing in cursive? Of course not; it is a development of fine motor skills that she is working through. I would be equally unreasonable to expect her to execute impeccable discipline and precision in her cane usage. But forcing her to use a tool that will not serve her in the future will slow her down in the present and set a life trajectory of lowered expectations on a deficiency model. This is like forcing her to learn only large bubble letters before she is allowed to learn Braille. No! We have high standards for our life, and we expect the same for Marley.

I was expecting to be met with a different philosophy and lower expectations for a standard of independence, but I wasn't expecting to be met with condescension and disgust. This is not the first time some stranger in his/her ignorance has attacked Marley's progression. Past actions from the school include refusing Braille, physically taking her cane away, and holding her hand instead of letting her run with her classmates.

At what point does life experience have any validity in the face of a formal education? Are my words worthless because I don't have a degree in O&M? What am I supposed to do, get a masters in every aspect of my life to be able to advocate for my daughter? If there is any term I can think of that depicts what my daughter is up against, it is institutionalized discrimination.

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