Four Categories of Deafblindness
It makes a difference whether a person is born deafblind, or whether he/she becomes deafblind later on in life. The use of the term "deafblind" tends to make people think that this means absence of sight and hearing in all cases. This is true of a very small minority of the population. In actual fact, most persons who are deafblind have some vision and hearing. Also true is that a large number of persons who are deafblind have additional disabilities and challenges.
Four basic categories of Deafblindness
Each color column represents a group of persons who are deafblind. For example, the bright green indicates persons who are born with BOTH visual and hearing impairments.
Click for more information on the Four basic categories of Deafblindness in PDF format.
IMAGINE you are deafblind: Close your eyes and put ear plugs in your ears. Now sit back and imagine if you can neither see nor hear. Keep in mind each of the four categories and consider the following questions:
- What would you KNOW or NOT know about the world around you?
- Would you know where you are - especially if no one told you or "showed" you?
- How would you relate to your parents - your mother, your father, your siblings?
- What would "friends" mean to you?
- How would you measure and understand TIME?
- What does the SPACE around you mean?
- What sort of image would you have of your physical self?
- What if you have a physical disability that does not allow you to walk or move around?
- Who "connects the dots" for you - to make your world more meaningful?
Causes of Deafblindness
The causes of deafblindness are numerous. The National Deaf-Blind Child Count has broken the causes into five major groups.
- Hereditary/Chromosomal Syndromes and Disorders. For most of these, a child is born with both vision and hearing issues. However, as in Usher Syndrome, a child is born with deafness or is hard of hearing, and later on becomes visually impaired. There is a small group of children for whom the opposite is true -- they are born visually impaired/blind, and acquire deafness or a hearing loss later on. It cannot be assumed that all children born with one of these etiologies also has mental retardation or other anomalies.
- Related to Prematurity.
- Pre-Natal/Congenital Complications. This group includes viruses such as Rubella and Cytomegalovirus or CMV, neuro-developmental disorders such as Microcephaly, and medical conditions such as Hydrocephaly, among others.
- Post-Natal/Non-Congenital Complications. This group includes trauma or damage to eyes, ears, or head/brain. This can be a result of an accident, lack of oxygen, physical or chemical abuse, infections, growths (tumors), or strokes. In this group, Meningitis is significant.
- Undiagnosed. This area in included as there are occasionally children for whom a diagnosis cannot be made immediately. Such is the case with some children who have rare genetic disorders.
The National Deaf-Blind Child Count report lists the following as the top ten etiologies reported:
- Heredity (2,107)
- Prematurity (1,112)
- Pre-natal complications (790)
- Post-natal complications (715)
- CHARGE syndrome (572)
- Microcephaly (369)
- Cytomegalovirus (CMV) (334)
- Hydrocephaly (284)
- Meningitis (279), and
- Usher Syndrome (246)
The report notes that CHARGE syndrome has shown the greatest growth over the years and it "is now the leading single syndrome associated with deaf-blindness" as reported on the annual census.
Oregon has been a part of the Usher Syndrome Screening (Dr. Kimberling) - using saliva (instead of blood) sampling to determine whether a child/youth who is deaf or hard of hearing has Ushers. As screenings continue, it is anticipated that there will be an increase in the population of children in this group.
The National Deaf-Blind Child Count: 1998-2005 in Review (Killoran, 2007)
Ushers Syndrome Resources:
- Usher Syndrome Blog
- The Oregon Deafblind Project’s 2006 Spring newsletter report on screening for Usher Syndrome using saliva samples and genetic testing.
Click to view an extensive listing of causes of deafblindness on the Deafblind Student Registry Form.