Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Monday, September 26, 2011

The barrier of intellectual ignorance

As I read Glenda's blog post about Cayleigh, I found myself getting angry.  Cayleigh is a four-year-old cp'er in Texas.  The Texas Department of Assistive and Rehabilitative Services would not provide a communicative device for Cayleigh until she started school.

Cayleigh is non-verbal.  Would you send your child to school before they were able to communicate?

Over the summer, Cayleigh's mom and dad bought her an ipad with the Prolouquo2go app,   Glenda has blogged extensively about what a premiere communicative device this is for the disabled at a much lower price than what the traditional devices cost.  Cayleigh's mom worked with her over the summer to master the device, but Cayleigh's teacher was not impressed:

"She started talking about a study that happened in the late 80's early 90's when facilitators were starting to be used. A facilitator is someone who supports the non-verbal person's elbow so that they can use some sort of communication system. This isn't new news to me, but I sat listening. Apparently the study found that when the non-verbal person was the only one who could see the object in question there were all kinds of errors, but when the facilitator was involved and was aware of the question the answers were often correct. Basically, subconsciously the facilitators were giving the non-verbal person some sort of signal. She then proceeded to tell me that because of those findings that she could not test Caleigh using her iPad the way that she currently uses it supported in our lap. She feels that Caleigh needs to be able to communicate independently for her to properly do her assessments. The sooner we can get another device the better."  -- Cayleigh's Corner
There is a intellectual arrogance when it comes to educating and training people with disabilities.  Jodie and I both spent our early school years at Holladay Center in Portland, a school for children with disabilities.  The school was a boot camp of sorts for us.  Intense therapy - physical, occupational, speech - as well as working with other kids with disabilities, gave us a base of skills and confidence to jump into the real world.

We tried to explain this one time to a cousin of mine who had earned her masters degree in special education.  She was pretty much appalled that Jodie and I would advocate any kind of segregation.  Our point was not that the disabled should be segregated from the non-disabled, but rather that there are times when the disabled can be together, pool their strengths and be a support for each other.

Through the years Jodie and I have heard stories from mother's with disabled children who get some services through the public school system, but not nearly enough to help them achieve the kind of independence that Jodie and I have attained.

I am not saying that Cayleigh's teachers mean to harm her by taking away the communication device that she and her family had mastered, or that all disabled students should always be together.  I am not saying that the experts on disability are wrong.

The disabled and the families that deal with disabilities have experiential expertise that should be at least on par with the book learned expertise.

We have enough barriers to overcome; intellectual ignorance should not be one of them.

Friday, September 23, 2011

Amazing garage sale

If you are out and about in Portland  tomorrow, stop in and check out:

The Amazing Garage Sale

Low prices...the family appreciates your support.

Monday, September 05, 2011


Last week, the state agency I work for,  began using a brand new, very comprehensive, SACWIS system. The information a child welfare agency must track is huge.  OR-Kids has been years in planning and development, and it replaces our FACIS system that has been around since 1994.  Yes, I was around for, I am getting old.

The new system requires much more data input.  It is labor intensive up front, yes, but as an eligibility specialist who mines data to gather enough  information, it is a bit of a dream.

Last week was hard for me though.  I wanted to get through at least one determination.  I kept running into bugs.  Flustered a bit, because I like forward progress, but not really surprised.  Soon me or the system will get whatever me or the system has to get and forward progress will be made.

Because my job is a unique on done by a small  group of us across the state, I started a wiki page for us all to report issues we are having with OR-Kids and posting solutions as they come through.  My hope is that we can use each other's issues and successes to speed our forward progress as a whole.

I am anxious to see how this experiment works.