This year Oona has an intervener (educational aide, with a skillset specific to the child’s needs) who identifies herself as DeafBlind. She is a graduate of Gallaudet who is Deaf with close vision, as a result of Usher’s Syndrome, a condition that involves progressive vision loss. In the DeafBlind community people avoid emphasizing medical diagnoses and focus instead on collective language/accessibility rights, but I just wanted to explain more for the benefit of a general audience.
The intervener herself has to be accommodated in the classroom, such as by tapping her to get her attention or making sure to sign in her range of vision, so the entire classroom space has become more competent towards low-vision ASL accessibility. I have observed that, in the short 2 months that she has been working with Oona, Oona started to sign much more.
As someone who experiences DeafBlindness herself, this intervener is able to very clearly differentiate which are issues with visual/tactile access to the sign, and which are other learning differences associated with Oona’s CHARGE syndrome. She has a powerful combination of intuitive and professional knowledge on how to make information and language more interesting and tactile for Oona. She holds Oona to high standards and keeps her accountable to using the signs that she knows.
I think it is obvious that, if Oona had this kind of intervener support since the age of 3, she would know a lot more sign than she does now. On an emotional/spiritual level as a parent, it is incredibly empowering to interface with an educator who is so affirmative of your child’s intelligence and abilities. It is clear to me that this type of specialized intervener support is integral to our DeafBlind children’s education and language rights.
We accomplished this by insisting that the school system put “intervener” on her IEP paperwork and then post a job call specifying “DeafBlind intervener” with knowledge & interest in tactile learning – to be hired as staff with professional development opportunities (previously DC public schools had provided aides who know ASL, but they were forced to temp through an agency – making minimum wage and paying independent contractor taxes, with no professional development opportunities.. labor rights are education rights are disability rights!). Thankfully the most recent low incidence disability director was supportive, but it took us 3 years of ups and downs to finally achieve this.
Next step: go back to Tactile Communications (moved from Seattle to Monmouth OR to be closer to the tactile interpreter program at U of Western Oregon) with Oona’s intervener to all get trained together in Pro-Tactile ASL!