YOUR STORIES - SHARE AND LEARN!
People's real-life experiences often provide the most valuable of lessons. And there will be more to come on a regular basis.
Many of you have been kind enough to share your personal stories about how the "Disability is Natural" message (via my presentations, articles, books, etc.) and/or your own common sense has caused you to rethink the conventional wisdom of Disability World and to take a new path. My thanks and appreciation for your sharing on our site; we can all learn so much from one another!
If you'd like to share the different path you're taking, how you're doing things differently from the status quo, or an "Ah-Ha" moment you've experienced, use the Contact form to send it to us for consideration. We'll review it and contact you before publishing it.
REGARDING EYE CONTACT
Rohan Braddy, a disability services professional in Australia, shared an enlightening experience with me after reading the “Eye Contact” article:
When I was 15, I was invited to an Australian Rules football club’s development squad. This was a big thing—it meant I was “making it” in the biggest sport in the land. The coach was a legend of epic proportions. There was nothing that he hadn’t achieved in the sport and he was universally respected. As kids, we were lucky to have him. At one point in training, he had us in a group and was coaching us on a specific point. I had my head down, but was listening intently (hanging on his every word in fact). Next thing I knew, I had a football smashed into my face so hard my nose was bleeding. The coach had hit me with the ball flush into my face! As I stared at him through tears of pain, humiliation, and incredulity, he berated me for not looking at him while he was talking. I have never forgotten that experience.
Ironically, years later, I experienced a 360 turn after a professional review. You'll never guess some of the feedback I received: I make too much eye contact when talking with people and it makes them uncomfortable!
I wonder whether the two experiences are related. *sigh*
FOLLOWING THE BUS
Dawn Machonis, an incredible parent from Virginia, shared "bus experiences" that many parents can either relate to or learn from:
I followed a bus today. It was the RamRide, a free bus for students that connects Virginia Commonwealth University’s two city campuses. My office is on the bus route and I followed the bus from a stop close to my office to one of the campus sites. Just so you understand, I wasn’t just driving behind the bus, I purposely followed it. I did so because that bus was holding precious cargo: my 25-year-old daughter, Grace, a VCU student and a young woman with Down syndrome.
This was the first day she was riding the bus on her own. We spent several weeks riding together so that I was sure she knew what to do when she got on, how to ask for a seat if there wasn’t one because she is unable to reach the standing straps, where to get off, etc. Early on in the process of teaching her to ride, Grace asked when she would be able to ride without me. I answered, “When we feel comfortable.” She looked at me and said, “When I feel comfortable, or when you feel comfortable?” She knows me well enough to know that her level of comfort in most things comes long before mine. And then, true to form, she lectured me on "letting go." So to be honest, following the bus was for my sake alone.
When Grace got off the bus, she was beaming with pride. She was all smiles, while I was all (happy) tears. Grace has much to celebrate. This is her second semester in college. Although Grace benefits from support from education coaches who are other students, she takes regular classes, participates in campus activities, and volunteers just like other students. One of Grace’s professors recently shared that she is a "dream student" and that she's very impressed by my daughter. Although Grace takes classes for audit, last semester she earned an 83 percent in her Women’s Studies course. Grace takes classes in the afternoon, because every morning she works at a job she has held for four-plus years.
On the way back to my office, I could not help but reminisce about the last time I followed a school bus. The precious cargo was the same, but I followed it for a very different reason. Grace was in first grade in a new school system, as we had moved the summer before. Every so often, Grace acted up on the bus. I agreed it was a concern, but it seemed to happen rarely and randomly—on the way to school, never on the way home. The immediate solution suggested by the school system was to put her on the "special bus," also known as the "short bus."
To me, this bus says "separate" and "different," and that's not how I ever treated my daughter. In my mind the "short bus" was not an option. This is a sampling of the type of treatment/mindset I would spend years fighting against in this public school system. I really wanted someone to tell me what "magic" the smaller bus had that would make my daughter’s outbursts change. Or was it that her behavior would be "acceptable" (or even "expected") on the "short bus," but not on the "regular bus"? School personnel couldn’t answer these questions to my satisfaction. It was only after I took the "special bus" option off the table that school personnel were willing and able to discuss creative solutions.
We tried a couple of things that didn't work. I then suggested that because Grace loves riding the bus and understands the concept of consequences, I would follow the bus and if she acted up, the driver would pull over at a designated spot and I would drive Grace the rest of the way to school. This would let Grace know that acting up on the bus was not okay and could be dangerous. Without my daughter knowing it, I followed that bus every morning for two weeks. Never once did the driver have to stop, nor did the behavior happen again.
Following the RamRide to the college campus today caused me to reflect on the differences between grade school and VCU/college. The K-12 experience was one in which I fought for inclusion every step of the way, while Grace’s experience at college has been based on inclusion. Where I had to cajole, ask, remind, insist, and in a diplomatic way, threaten in order for the K-12 system to meet Grace’s rights and needs (without full success), VCU wants to know what kind of support Grace needs to be successful. (I would be remiss if I did not give credit to Grace’s 2nd-3rd grade multi-age classroom teachers; these were the only years when I felt Grace was welcomed with open arms by innovative and creative teachers who sought to meet the needs of all their students. Thank you, Barbara and Debbie.)
If at this point you're thinking, “But accommodations and modifications for students with disabilities are the law for K-12." In our family's experience, the law didn’t make a difference. I learned early on in Grace’s school experience that the IEP was meaningful and legal only if you take the school system to court. Not many parents have the time, energy, and finances to do that.
I know Virginia Commonwealth University welcomes my daughter. Each of her professors has treated her like any other student. This feeling of acceptance has benefitted my daughter, but honestly, I believe it has done more for me. I'm finally able to leave behind some of the pain I experienced as a result of her K-12 schooling.
I am so proud of my college student and grateful for VCU. I am happy to say my bus-following days are over...
Oh, wait! Grace will soon be learning to use the city bus system. Thankfully I have an understanding daughter.
UPDATE from Dawn in Fall 2017:
Grace took her first solo ride on the city bus last week. (And I didn't even follow it!) She’s working full-time as an office assistant and wanted to ride the bus home — she’s learned one leg of the trip on her own!
Note: Several years ago, Dawn contributed another story about Grace and inclusive worship services. We can all learn a great deal from Grace and Dawn!
New Ways of Thinking and Revolutionary Common Sense