June is DeafBlind Awareness Month, a time to recognize people within our community living with both visual and hearing impairment. June was chosen as DeafBlind Awareness Month because June 27 is the birthday of political activist and prolific author Helen Keller.
The Center for Deaf-Blind Persons (CDBP) in West Allis has been an important resource for people across Wisconsin living with DeafBlindness for nearly 40 years. Starting as a social and support group for people with dual-sensory loss, the Center now provides a variety of training and other services.
“The DeafBlind population can be lost in the shuffle sometimes,” says CDBP Executive Director Adrian Klenz. “We have to find a way to raise the profile of people with DeafBlindness, because we are the only people doing what we do in Wisconsin.”
When most people think of a person who is DeafBlind, they probably imagine someone with complete loss of both sight and hearing. While this is true in some cases, the reality is that DeafBlindness is a spectrum. In the DeafBlind community there are people who are totally blind with some hearing loss, people who are totally deaf with some vision loss, and everything in between. According to the National Center on Deafblindness, only around 1% of children who are deaf-blind have both profound hearing loss and total blindness.
Because of this misconception, people who are DeafBlind are often an “invisible population,” and may not be getting all the services they need to live a safe and independent life. This misconception also makes it difficult to know exactly how many people there are in Wisconsin with dual-sensory loss. While CDBP estimates there are around 900 people who fit the legal definition of deaf-blind in the state, they say the number of Wisconsinites with some level of dual-sensory loss is closer to 20,000.
Here at the Council, we can provide services and support for those with vision loss, but we know that people who are DeafBlind have unique needs and challenges. CDBP has been instrumental in supporting the DeafBlind community with services to address those needs.
One of CDBP’s biggest programs is called iCanConnect (iCC). Part of a national program, iCC provides eligible people with DeafBlindness free adaptive technology. “We can send a staff member anywhere throughout the state and help them set up and learn how to use their adaptive technology,” Adrian says.
Adrian says the adaptive technology can be something as simple as learning how to use accessibility features on your iPhone, or using a larger computer monitor to better read emails. You can learn more and apply for the iCC program at ICanConnect.org/How-To-Apply/Wisconsin.
Like the Council, CDBP also teaches daily living skills. People with dual-sensory loss can go to the Center to get a personal assessment that can help CDBP staff understand exactly what skills they need to acquire to continue to live independently. With over a decade of experience, Center staff can help people with dual-sensory loss navigate activities like cooking and cleaning, wardrobe management, hygiene, and creative endeavors like beadwork, writing and quilting.
CDBP also continues to provide a space to socialize and find support. They regularly hold social events both at the Center and around the Milwaukee area. Earlier this month, for example, they attended a Milwaukee Brewers baseball game.
Having one sensory disability is a challenge, Adrian says, and losing both your vision and your hearing can be an even bigger one. He emphasizes that it’s important to remember you are not alone, and with the right support you can continue to live a full and independent life.
“There is a lot of stigma and a lot of fear around having any disability, especially when you lose both your hearing and your vision,” Adrian says. “The first step to living independently is to reach out to services like the Center, or your local Aging and Disability Resource Center.”
