To Sign or Not to Sign Part 2: American Sign Language

June 10, 2009

By: Mark DunningĀ 

To sign or not to sign is still the question before us, only today we'll talk about American Sign Language (ASL) as a management option for Usher syndrome. Historically, this has been more than just ASL for people with Usher. Eventually, as their vision degrades, people with Usher who had used visual ASL turn to tactile sign. There are a number of different variations on tactile signing, but for most people with Usher it means one of two things. For those with limited but still useful vision, it usually means holding the wrists of the signer in a location within the receiver's field of vision. For those without useful vision, tactile sign usually involves the receiver placing his or her hand on the back of the signer's hand and following the movements or the finger spelling of each letter of each word in to the palm of the receiver's hand.

Only a small percentage of the overall population knows American Sign Language and only a small subset of that group knows tactile sign. When compared to spoken language, the population is miniscule and it's a frightening thought for many parents of newly diagnosed children. So why even discuss ASL as a management option for kids with Usher syndrome? Here's four reasons:


Usher Adults Who Use ASL Are Successful and Happy
As a parent without vision or hearing problems, I rely heavily on both my sight and my hearing to live my life. It is hard for me to imagine being happy were I to lose them. The truth is, though, that the majority of Usher adults I have met are happy. There are vibrant deafblind communities in the United States and elsewhere where families live happy lives using tactile sign as their primary means of communication.

Now don't get me wrong. This isn't an argument about what is easier or offers more opportunity. It is simply about happiness which, ultimately, is what we're all pursuing. A career, money, family, opportunity, are all about happiness in the end and Usher adults who use ASL can be, and usually are, happy.

Treatments for Vision Loss Associated with Usher May Be Available Within the Next Decade
There are a number of clinical trials under way that hold the promise of halting and even reversing the vision loss in people with Usher syndrome. The argument against a discussion of ASL as a management option always begins with 'For someone at risk of losing his/her vision...' Well, what if that's not true?

The more time I have spent speaking with researchers, the more convinced I have become that viable treatments for all types of Usher syndrome will be available for general use within the next decade. A child born today, even a child with one of the most aggressive forms of Usher syndrome, can expect two decades plus of usable vision. That's 20-25 years minimum before needing to move from ASL to tactile sign. It is highly likely, therefore, that such a child born today will never lose his or her vision. There are no guarantees, of course, but doesn't that at least make ASL a management option worth discussing?

Parents are Smart
This one trumps all the rest. Parents are not dummies. They, more than any of us, want what is best for their child. Given all information on all options, engaged parents will invariably make the right decision for their child. Let me repeat that. Engaged parents will always make the best decision for their child. Give them all the information and trust them to do the right thing.

The Elephant in the Room
Here is the most important reason for putting ASL on the table as a management option: It's already there. When parents learn their child is deaf, they immediately think about sign language. It has to be discussed as an option for just that reason.

The point of these past two posts boils down to this: I hear strong opinions from all interested parties on ASL and Usher syndrome, from parents to physicians to researchers. All want to influence the choices of parents. But the best way to influence the thinking of a family is to put all options on the table because parents will tune out anyone who they suspect is holding back information. Remember, parents are smart.

To truly influence the choices of parents requires the sharing of all information on every possible option. So if you do have a strong opinion on the matter of signing and Usher, whether you are a doctor or simply another parent, by all means voice your opinion on it. But if you really want to influence them, tell them where they might find a counter argument. Then trust them. They will make the right decision for their child.

Do you have a question or comment? We'd love to hear from you. Your comments will not be made public without your permission.
Would you like this comment to be made public in future testimonials?