Tag Archives: Molly Watt

Adapting to Usher Syndrome and Deafblindness

Molly Watt is a young speaker, vlogger, and author who is Deaf-Blind and advocates for people who have Usher Syndrome, the condition she has. Watt has created an awareness video about the syndrome, as well as an open-captioned vlog about technology she uses daily to assist her with both hearing and vision loss that comes from having Usher Syndrome.

Young woman walks down street using a guide dog. Words at bottom of slide "and the worst case scenario for any deaf person is to lose their sight"
Molly Watt describes how Usher Syndrome is a worst case scenario for someone with hearing loss in one of her awareness videos. http://www.mollywatt.com/keynote-speaking

According to the National Institute on Deafness and Other Communication Disorders, Usher Syndrome is a genetic disease or disorder that affects both hearing and vision and is one of the leading causes of deaf-blindness.

Symptoms of the syndrome include:

  • deafness or hearing loss,
  • balance problems,
  • retinitis pigmentosa, which causes night-blindness, and
  • a loss of peripheral vision (side vision) through the progressive degeneration of the retina.
Screen shot from a video showing tunnel vision and the words Steps can be quite disorientating.
Molly Watt portrays the tunnel vision she has in an awareness video. https://www.youtube.com/watch?v=Hq6rRQTIoqM

Retinitis pigmentosa eventually causes “tunnel vision,” where a person can only see straight ahead.

There are three types of Usher Syndrome, ranging from Type 1, where children are born profoundly deaf, have problems with balance, and eventually become legally blind, to Type 3, where children may have normal hearing at birth, and gradually lose hearing, vision, and balance.

Picture of cell phone with message that it's connecting to hearing devices. At the bottom fo the slide text asks how she hears music if she can't hear and the response is Hearing Aids-duh!
Watts wears hearing aids that she pairs with her cell phone. The direct connection between her cell phone and hearing aids provides better quality sound. She also pairs her hearing aids with a smart watch. https://www.youtube.com/watch?v=_-yrqbaN1II

According to the institute, early diagnosis of Usher syndrome is important so parents can enroll their children in training programs to manage hearing and vision loss.

Frame from a vlog that shows a black guide dog and says "Occupation: guide dog for the blind my mobility aid."
Molly Watt’s vlogs often include her guide dog, which is a vital tool for her independence. https://www.youtube.com/watch?v=_-yrqbaN1II

Typically, treatment will include:

  • hearing aids,
  • assistive listening devices,
  • cochlear implants,
  • communication methods such as American Sign Language;
  • orientation and mobility training;
  • communication services; and
  • independent-living training that may include Braille instruction, low-vision services, or auditory training.

Sign language can be a vital tool for communication for people who have advanced Usher Syndrome, since people without hearing or sight may choose to communicate using Deaf-Blind Tactile with an interpreter. This process allows the person with deafblindness to feel the interpreter’s hands as they sign.

Sign Shares, Inc./International provides services for people who are Deaf-Blind, Deaf, and Hard of Hearing, as well as for people who are Foreign Language Hearing.

You may book an interpreter with Sign Shares using this link.

Download the fact sheet on Usher Syndrome at this link.

Learn more about Molly Watt and her mission to educate others about Usher Syndrome at http://www.mollywatt.com/.

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