Siobhan, the Soundbeam, and Disablism

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?