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Posts by Sara

Pro-Tactile American Sign Language

What is Pro-Tactile ASL?

Pro-Tactile ASL is now considered a distinct language from ASL, which DeafBlind activists started referring to as “Visual ASL” or VASL, in order emphasize the different modalities of the languages. The Pro-Tactile movement is not just a language movement but also a holistic philosophy of DeafBlind autonomy and community-building. The Pro-Tactile movement believes that DeafBlind people are empowered through community with other DeafBind people, and the natural language most easily shared by the community is tactile sign language. 

Who uses Pro-Tactile ASL? What if my DeafBlind child is developmentally delayed, and/or intellectually disabled?

Most of the pioneers of the Pro-Tactile movements are DeafBlind adults with Ushers Syndrome who were previously active members of the Deaf Visual-ASL community but gradually became socially alienated as they could not see well enough to follow conversations. They came together starting in the early 2000s in Seattle to create and standardize their own tactile language; the development of this language is still taking place as an ongoing process.

However, despite the fact that many active users of Pro-Tactile were previously fluent in Visual ASL, the Pro-Tactile community asserts that Pro-Tactile ASL is also the natural language of children born DeafBlind, and the most accessible language to DeafBlind people of any intellectual ability. This means that you don’t have to know visual ASL first in order to learn Pro-Tactile ASL. A person born DeafBlind would ideally be socialized into using Pro-Tactile ASL for a young age, just like we are socialized into using other languages from a young age. Much like the Deaf-sighted community asserts that ASL is the language right of all deaf children, the DeafBlind activist community asserts that Pro-Tactile ASL is the language right of all DeafBlind children. That’s why some DeafBlind friends have suggested that a DeafBlind intervener who is experienced with kids and fluent in Pro-Tactile ASL would be the best the person to work one-on-one with a DeafBlind child.

Where can I learn more?

Last year Quartz media made this short clip about my friend Oscar using Pro-Tactile ASL at Gallaudet. Check it out here! And here is the accompanying article that gives more details and information

Another inspiring publication is John Lee Clark’s book Where I Stand: On the Signing Community and my DeafBlind Experience (Handtype Press, 2014). I loved reading this entire book because it immersed me in the life story of a DeafBlind adult, including all his passions for literature, poetry, and parenting. In the last chapter of the book he talks about the Pro-Tactile movement and how excited he is about it. However, when he published in 2014, Pro-Tactile ASL was not yet classified as a distinct language – he describes it as ASL and is not sure whether to even call it a dialect of ASL. Since the time he published, the community and academic researchers in linguistics designated Pro-Tactile ASL as a new language. If you really want to geek out on the story of the language and its linguistic components, check out Professor Terra Edwards dissertation available for download at this link. You can also check out this short interview with her from 2011 where she explains her research. 

Enough with all the geeky academic stuff! Check out the blog of a mom who applies Pro-Tactile principles to her DeafBlind kid. This is Heather’s blog about her son Orion. There is lots of great stuff here. She is Deaf and fluent in Visual ASL, so it was easier for her to incorporate Pro-Tactile ASL into her parenting than it is for us hearing parents who don’t already know sign language.

Going back to the Pro-Tactile movement, here is a video blog by the two founders Jelica Nuccio and aj Granda. If you don’t know ASL well enough to follow their conversation in the video, just scroll down and read the transcript. It helps to read the blogs in order, from number 1 through 5. They are a little all over the place in the topics they cover, and the blogs are pretty detailed because they are directed towards DeafBlind adult peers who are active in the movement and disability rights. But hopefully you will get something out of it, or at least check it out and bookmark it for later. Jelica runs an organization called Tactile Communications, where DeafBlind adults go to get trained in Pro-Tactile life skills and language. 

So what does this mean for our kids? Well, that’s a question that everyone is trying to answer right now. As many parents on this list probably experienced, most Deaf schools currently shut out our kids who are DeafBlind and/or Deaf “plus” (Deaf-disabled). DeafBlind kids are even shut out of the national model school for Deaf education – Kendall Demonstration School at Gallaudet.

Hope you found all this interesting, and maybe at least some of it tickled the brain cells towards some new ideas relevant to your child!

On DeafBlind Interveners

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!

Greetings!

Hi, this is Oona’s mom Sara. Oona is a 7-year-old DeafBlind child with CHARGE syndrome. I hope that sharing our journey with the world will be helpful to other families and build community. I write about a broad range of topics that affect Oona’s opportunities and quality of life here in the Oonaverse, including education policy, linguistics, health services, social justice, etc. I hope you enjoy the blog and comment.