IEP revision day, and this popped up in my Facebook memories. We’ve been advocating since 2014, this post was written by Aaron Rupp in 2015, and I could not be more grateful for the team assembled around the conference room this morning. However, my heart goes out to all of those students out there who don’t have parents who are on top of advocating for them, the students who have been written off or who have slipped through the cracks. My heart goes out to the parents who are fighting the fight, battling IEP battle after IEP battle, especially at the beginning of every year where it feels like we are starting from scratch to get accommodations that are blind children are entitled to receive. My heart goes out to the good teachers who are completely stretched thin. Wouldn’t it be nice if we could just start the school year knowing that everything will work out, that our kids will get their materials in the format they need, on time, and not have to deal with inaccessible programs and standardized test, low expectations, bullying, and an education system that needs a serious overhaul.
(Aaron Rupp, 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…
Oh I feel your pain! I also advocate extremely hard for my child. I, too, have finally assembled a great team but we still have rough days. IEP days are so tough – even when they go well. Keep up the good fight for empowerment and equal rights. ((Hugs))
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We are just diving into the dyslexia world. I’m advocating like a pro over here. Getting a screening from a woman outside of the school district on Tuesday. I’m not praying for a yes diagnosis but if I can put a name to whatever is going on with my 6 year olds reading then I can be even more proactive in helping him.
Loving this post. I’m going to share it on Facebook.com/DailyMomBlogs in the next few weeks!
Thanks Patty. Best of luck to you and figuring things out and stand strong in your advocating.
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Ugh it sounds like the school system in Vegas is even worse than when I was going through it in the 80’s and 90’s. I got good O&M training back then but then when I dared to use it I would get in trouble. And I would get gigantic guilt trips if I dared to ask for non-required books to be brailled. I’m glad your daughter has you fighting for her though!
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