In Siobhan, the Soundbeam, and Disablism I wrote of our continually failed quest (since 2003) to include our daughter, Siobhan, in the same wonderful music program as all the other kids in the Santa Monica/Malibu Unified School District (SMMUSD). Siobhan has some severe disabilities, but she’s fully capable of pushing a big red switch. The switch in this case is attached to a Soundbeam 2 system, which can be preloaded with music cues. Siobhan’s paraprofessional can assist in the process by using error-free teaching techniques to assure success.
Each year at Individual Education Plan (IEP) time we invite the music teachers. As a group they have given me the impression that hell would have to freeze over before Siobhan would be allowed to muck up their massively impressive Hollywood-quality concerts. Plus the music teachers have failed to even show up most years. This year they showed up.
There were the usual multiple reasons why the Soundbeam can’t be used - end of year, big concert, lack of training, etc. To their credit the teachers did put some effort into learning the Soundbeam… the day before the IEP meeting. Suffice it to say that we had reached yet another impasse.
Then I was inspired to action. Action is the magic word. What action was I inspired to? I blurted out “all we want is for Siobhan to play one music cue, in one music piece, in one concert.” Silence. There was silence in the room for a few seconds. I felt like I had given away the store, that six years of waiting suddenly had the potential to produce only one note.
And then the miracle happened. One of the music teachers was inspired by this interchange. He began thinking of ways to make this new goal happen. He said: “How about if she played the gong at the end of the Pink Panther?” This is exactly what Siobhan did last night, Tuesday, May 26th, 2009, on stage, in Barnum Hall, at Santa Monica High School, in Santa Monica, California. Here’s a picture of the gong she played with the gong in the foreground and the violin players in the background: http://twitpic.com/613pc.
Here is part of what I wrote last night to the entire village and a half that produced that one gong strike: “Words cannot describe our absolute delight at hearing that gong tonight. Linda and I sat in our seats terrified that something would go wrong but it didn’t, thanks to practice and to Meghan (Siobhan’s marvelous paraprofessional). Siobhan was so cool she even hung up her mallet before applauding.” And she did, she hung up her mallet just like any other trained musician, before joining in the applause and taking her bow with the rest of the orchestra. I am so immensely proud of her, and very thankful to that one teacher who saw a clear path to make it happen.
By the way, that teacher who made it happen? He has a child with a disability.
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Today is Blogging Against Disablism Day brought to you by Diary of a Goldfish.
“We that are strong ought to bear the infirmities of the weak…” Romans 15:1 - motto of Clipped Wings, a national organization open to all former, retired, and current United and Capital Airlines flight attendants.
In 2003, my family had the privilege of attending the family reception sponsored by Clipped Wings at theSpecial Olympics World Games in Dublin, Ireland. At that reception an award was given to Eunice Shriver and we heard a wonderful musical presentation that fully integrated musicians of all abilities. The orchestra was using traditional instruments alongside a Soundbeam 2 MIDI performance controller activated by switches and beams. When we saw the Soundbeam equipment being used by musicians of all abilities we knew that our daughter Siobhan, a student with disabilities, could participate in mainstream instrumental music.
On YouTube there are some video resources to help you understand the Soundbeam. Though they focus more on music therapy than on mainstream music class and performance, you should get a clear picture of what the Soundbeam is and what it can do: Welcome to Soundbeam Part 1 and Welcome to Soundbeam Part 2. On YouTube you can also see Siobhan.
Since 2003, we have been unsuccessful in getting our schools to include our daughter in music. We even got our school to purchase the Soundbeam equipment, but it sits there, year after year. No one seems to have the imagination to understand what it is we saw in June 2003.
It is still our hope that Siobhan be included in mainstream music classes and performances. There is a music goal in her Individual Education Program (IEP) calling for the use of the Soundbeam. We have a four page timeline listing our begging, pleading, cajoling, demanding, asking, suggesting, interposing, meeting and otherwise chipping away at the goal month after month, year after year. For 6 years.
We’ve invited music teachers to each of the yearly IEP meetings. We had one music teacher actually sneer when we asked him to implement Siobhan’s music goal. This is Disablism at its finest. Because Siobhan doesn’t make verbal speech, because she has poor balance, because she lacks fine motor skills, she must not be able to participate. Have you ever heard a beginner violin orchestra performance? Sounds just like cats. Siobhan could have actually helped at those performances.
Disablism has been very much a part of our lives since Siobhan was born in 1992 but you know the strange thing? Out in the world people generally take Siobhan at face value. They take her order in restaurants though she uses assistive technology to “talk.” She’s known at the Saturday farmers’ market we go to each week. One farmer keeps the good grapes for her because he knows she likes them so much. The strange thing is: we usually only encounter out-and-out Disablism when interacting with school people. Now why is that?
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Since David did such a great job of reviewing the candidates’ Websites and in response Obama’s team actually fixed some things on their site, I thought I would review the brand new www.whitehouse.gov site that went live on the 20th.
You can read my comments on everything from use of images to multimedia here: www.patriciarees.com/whitehouse/
In general, I was surprised that they missed some pretty simple things like a few important images without equivalent text, a broken search form when javascript is off, but they got the harder things like captioning their videos.
I’m going to send them my review, since the site asks for accessibility comments and help. Hopefully they can be as responsive as the campaign Website team was.
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American Media Services Interactive has joined hands with FlyCast to provide 193 online music channels to listeners on mobile “smart” phones. Continue reading AMSi, FlyCast to Enhance Accessibility of Cell Phones.
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WIRED: YOU WOULDN’T necessarily think of cutting-edge web development as being strongly connected with making the world better for people with disabilities, but it turns out that many of the strongest online design advocates take that as their driving design principle writes Danny O’Brien Continue reading An accessible web is common sense
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