Institutional Review Board

Being required to submit a proposal to the IRB has only been a total burden from my perspective until class on Monday.  It seemed like overkill and just another way radical people are taking charge of something, and well, really it was just more paperwork (which is my nemesis).  It reminded me a lot of special education paperwork—all of the boxes we have to check, all the individualized education program phrases we have to use within the truly “valuable” text, all of the signatures, all of the forms, ALL OF THE PAPERS.  On some days I have the perspective of, “This is so useless!” or “What a waste of time.”  My thinking doesn’t even go in a place where I can see the value of ensuring that I use the following phrases when writing present levels of academic achievement and functional performance:

“________ has a disability that adversely affects his/her academic achievement (progress) and functional performance in general education math curriculum and requires specially designed instruction. According to _________ (data source), given ______ (date), ___________ (student) is currently functioning at _______________ (instructional level) and can __________. _____ disability in math affects his/her ability to progress in the general education math curriculum. He/She needs to ___________.”

The stuff that’s highlighted I just don’t understand.  The black print is totally necessary.  Of course we know this person has a disability that affects progress, that’s why they have an IEP!  And of course the disability in the area listed affects progress in the general ed. curriculum…that’s the nature of the situation.  And even though the goals I write in individualized education programs (IEPs) are called “measurable annual goals” and the goal page has a title indicating so, a new requirement this month is for me to write at the beginning of each goal “within one year, ____,” as if we’re not sure how long the goal should be worked on!  It makes the goal harder to read, and detracts from meaning, but I suppose it’s just an additional way to create accountability for the small number of people that might take advantage of a marginalized population, or may neglect them due to no obligation or guideline.

Tuskegee Syphilis Experiments
(http://www.uaff.us/tuskegee_experiments.htm)

Then I remember, there was a time when people with disabilities were not considered people.  There was a time when Nazis performed medical experiments on Jews.  There was a time when human beings with syphilis served as guinea pigs for science and went without medical treatment, many of them dying.   Marginalized populations, vulnerable populations, have been taken advantage as partly a result of lack of regulations, lack of knowledge, and lack of review.  The IRB serves as a protection for these vulnerable populations, and my willingness and adamancy about completing the IRB process has increased monumentally.  I have more commitment, and less complaint, which is such a beautiful product that naturally follows when gaining knowledge, abandoning some more of my ignorance.   I rather comply with strict guidelines that decrease the chances of a study taking advantage of a person or people, than skip through some paperwork for the sake of time.  Overall, the principle on all the paperwork in my life is a good one, and my attitude about the burdens of it has changed.

Nazi Human Experimentation
(http://www.uaff.us/tuskegee_experiments.htm)