This June 26th to July 2nd, the Helen Keller National Center for DeafBlind Youths and Adults is celebrating the Hellen Keller DeafBlind Awareness Week. The focus this year is “Diversity and Inclusion: Creativity and innovation are built upon a diverse group of perspectives”. Who better to help initiate that innovation than the Deaf-Blind community, a group of people whose lives are driven by the pursuit of change and innovation?
HKNC is the only national agency that provides information, referral, support, and a comprehensive vocational and rehabilitation program exclusively to youths and adults who have a combined hearing and vision loss, their families, and to the professionals who work with them.
Helen Keller was a pioneer for disability rights, and her life-changing story continues to inspire us today. Helen Keller was an American author, campaign activist, and philanthropist. Born in Alabama, Keller was stricken with two diseases and became deaf-blind at a very young age. She most famously learned how to read and write with the help of her tutor Anne Sullivan. During her lifetime, Helen Keller became advocated for Americans with disabilities and people who were visually impaired. She also fought for women’s right to vote and was one of the initial participants of the Socialist Party in America.
Deaf-blindness refers to the combination of hearing and visual loss that severely impedes communication, education, employment, and independent living. While some individuals are totally deaf and blind, most deaf-blind people have different degrees of hearing and vision loss.
It is defined in IDEA regulations as “concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.”
In 2020, the National Child Count of Children who are Deaf-Blind identified 9,894 children ages 3 to 21 with deaf-blindness. The population of children who are deaf-blind is one of the smallest yet most diverse groups of children receiving early intervention and special education services. In addition to deaf-blindness, many children also have physical or cognitive disabilities, complex medical needs, and/or behavior challenges.
Deafblindness is a combination of sight and hearing loss that affects a person’s ability to communicate, access information, and get around. It is also called “dual sensory loss” or “multi-sensory impairment”.
A deafblind person won't usually be totally deaf and totally blind, but both senses will be reduced enough to cause significant difficulties in everyday life.
These problems can occur even if hearing loss and vision loss are mild, as the senses work together and one would usually help compensate for the loss of the other.
Deafblindness most commonly affects older adults, although it can affect people of all ages, including babies and young children.
In older people, it may develop gradually and the person themselves may not realize their vision and/or hearing is getting worse at first.
Signs of a problem can include needing to turn up the volume of the television or radio, difficulty following a conversation, not hearing noises such as a knock at the door, asking others to speak more loudly, slowly, and more clearly, needing to hold books or newspapers very close or sitting close to the television, or difficulty moving around unfamiliar places.
If someone already has either a hearing or vision problem, it's important to look out for signs that suggest the other sense may be getting worse too.
Vision loss can also be present from birth or develop later on. Signs someone may have a problem with their vision include:
If a person already has a problem with their vision – for example, they wear glasses, use a cane to get around, or have a condition such as glaucoma or cataracts – be alert for signs of hearing problems that could develop.
There are many potential causes of deafblindness. Some babies are born deafblind, but in many cases the hearing and/or vision loss occurs later in life.
Causes of deafblindness include:
A range of care and support services is available to help deafblind people. Each deafblind person will have a different level of hearing and sight loss, which means they’ll have their own individual care needs.
The general aims of care for a deaf-blind person are to:
Communicating with a person with deaf-blindness can be difficult for those who don't understand the condition. Many people who haven't had experience with sensory loss have the tendency to simply speak louder or use exaggerated gestures to get their point across. This is unlikely to help, as it does nothing to address the specific circumstances of their conversation partner's sensory problems.
Isolation is a major concern for people with dual sensory loss. Some people lose one sense before the other and learn to adapt only to later be faced with the loss of another sense. For instance, a person may be hard of hearing and rely on lip reading, only to have his or her vision then fade and be faced with finding an entirely new way to communicate.
Here are some communication tips:
This year, we are asking everyone to share the story of deafblindness. So, be aware of deafblindness, understand how to help someone who has it, and to tell someone else about it, to help spread the word. The more people who understand the condition, the more we can make life a little easier for people who are affected by it. By working together, we can make a huge difference!
Visit https://www.helenkeller.org/hks/get-involved to give people who are blind, visually impaired, or have a combined vision and hearing loss the tools to live, work and thrive in the communities of their choice.
Sources:
https://www.helenkeller.org/hknc/dbaw
https://www.nationaldb.org/media/doc/2020_National_Deaf-Blind_Child_Count_Report_FINALEDITED_a.pdf