Meet the Rupps, your classic old American family living in the suburbs.
The other blogger in the family, author of The Seed Project, is a firefighter who loves reading, music, photography, and the great outdoors.
Stay at home mommy blogger who loves coffee, wine, the ocean, planning family getaways, jogging, and the occasional mom’s night out.
Almost 6, is missing three of her front teeth, loves dressing up in mom’s clothes and high heels, making dresses for her dolls out of anything she can get her hands on, and just started Kindergarten.
Almost 4, loves legos, robots, broccoli, blueberries, cuddling on mom’s lap, and teasing his big sister.
Just your typical old American family, accept mom and daughter are both blind. Some may argue that they aren’t blind because they get around so well and have some usable vision. Basically, blind is blind. There’s no other way around it. Mom doesn’t see well enough to drive a car. She reads Braille, uses accessible technology, and in the words of a stranger on the street, “Commands the sidewalk with her cane.” Why even bother with words like, “legally blind, “Visually impaired,” or, “Low vision,” that promote low self worth through low expectations? We’d much rather have high standards by dropping the sugar coated politically correct phrases, and just say, “Blind.” Mom has generously passed down her Optic Nerve Atrophy to her daughter. How lucky is this little girl to have a mom who has already acquired the tools, and laid the foundation to set her up for nothing but success so that she can live the life she wants. .
Last night the family enjoyed a delicious dinner out on their back patio. The kids ate steak, broccoli, watermelon, and home made cookies. The grown ups had their steak over a kale salad tossed with mushrooms, red bell pepper, and Feta cheese.
Tonight, they’ll be making almond flour pizza.
Tomorrow, the Rupp house will be filled with friends for a Labor Day barbecue.
Friday, was a whole different story.
If you haven’t already read what Daddy Rupp wrote Friday afternoon on his Facebook wall about the happenings of a meeting with their daughter’s educational team, please do so below. These beautifully articulated words come from a very upset father who hates the fact that in every step of his daughters short time in the school system, they are finding themselves met with battle after battle.
For now however, we will enjoy our long weekend just like all other Americans.
Tuesday, we assemble the troops and prepare for battle.
written by Daddy Rupp on Friday September 4, 2015.
“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 and stay focused at this critical moment. But the pounding is almost all I hear and feel..,
At the table with me is Terri Rupp (my wife) and Marley’s (my daughter) 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 a much shorter, 3x heavier with a que ball end cane 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 teachers 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 principle, kindergarten teacher, low vision teacher and special services coordinator) CLEARLY saying without using words, “who the fuck do you think you are to make decisions for your daughter, & I can’t believe we’re wasting our time listening to his shit folks”.
The words she IS using is, “what training and credentials do you have in orientation & mobility (O&M)” (to have a say in the course of your daughters independence development). She says, “I have a masters in O&M, and YEARS of experience”, she says, “Marley’s white cane with metal tip is a danger to others”.
I look at these divine and almighty credentials of hers as a hindrance, she has had 6 years of formal training on how a sighted person tells a blind person what’s best for them, and has been teaching sub prime methods that do not encourage confidence nor allows them to navigate through life at equal pace with their peers.
What does the short cane mean to me?
~First of all it is shorter, so instead of picking up on obstacles and landscape variations several feet in front of the user, they discover steps and walls when they are LITERALLY INCHES in front of their toes. It sets foundation for slower, less confident walking, and that is a fact.
~The standard cane is heavier (2-3 times heavier) than her long white cane, with a weighted stub at the end, that is meant to be push/drug, grinding against forward motion with every step, and catches on every crack, rock and twig the user encounters. This does not allow the user, or my daughter, to move freely or on par with their peers, and again, reinforces the foundation of lower expectations and standards. That is a fact.
~Most importantly, the difference SYMBOLICALLY from the short, red ended heavy cane vs the long white cane. The standard cane originates in the UK circa 1921, by James Biggs, who found himself newly blind and painted his walking stick to become more visible. (White cane, Wikipedia.org). 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,NFB.org) One was created from a “discomfort from the amount of traffic around his home”, and designed for the purpose of “being more visible”. Of its entire development from England in the 20’s, to France in the 30’s and the lions club in America in the 50’s, the main theme from its inception, to its development and adoption into law, is the concept of “visibility”, alerting others of a blind person. In contrast, the long white cane was created from a dissatisfaction for “the short, heavy… type, and we youngsters associated carrying a cane with begging, shuffling along, and being helpless”, and designed for the purpose of “advancing on the road to freedom and independence”(Jernigan). And THOSE 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 handicapable 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 compassed by a lifetime experience, Terri being blind since childhood, and me having been partnered with her for the past 11 years. Terri as a child went through a system that enforced the negative promotion model of blindness. She learned on 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 reading at 15-20 words a minute, and walking into light poles & fire hydrants! 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, and now 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 is unwittingly discriminating, and is exemplified by her insistence on sub prime, and archaic teaching methods.
Cane travel skills are like handwriting skills, am I to expect my 5 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 unreasonable to expect her to execute impeccable discipline and precision in her cane usage either. 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, 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 their own 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”? My words are 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…